community research case studies

• Research article
• Open access
• Published: 12 April 2018

Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project

• Marie-Claude Tremblay   ORCID: orcid.org/0000-0002-4965-2515 1 ,
• Debbie H. Martin 2 ,
• Alex M. McComber 3 , 4 ,
• Amelia McGregor 3 &
• Ann C. Macaulay 4  

BMC Public Health volume  18 , Article number:  487 ( 2018 ) Cite this article

76k Accesses

74 Citations

24 Altmetric

Metrics details

A longstanding challenge of community-based participatory research (CBPR) has been to anchor evaluation and practice in a relevant theoretical framework of community change, which articulates specific and concrete evaluative benchmarks. Social movement theories provide a broad range of theoretical tools to understand and facilitate social change processes, such as those involved in CBPR. Social movement theories have the potential to provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR. The current study builds on a social movement perspective to assess the processes and intermediate outcomes of a longstanding health promotion CBPR project with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KDSPP).

This research uses a case study design layered on a movement-building evaluation framework, which allows progress to be tracked over time. Data collection strategies included document (scientific and organizational) review ( n  = 51) and talking circles with four important community stakeholder groups ( n  = 24).

Findings provide an innovative and chronological perspective of the evolution of KSDPP as seen through a social movement lens, and identify intermediate outcomes associated with different dimensions of movement building achieved by the project over time (mobilization, leadership, vision and frames, alliance and partnerships, as well as advocacy and action strategies). It also points to areas of improvement for KSDPP in building its potential for action.

While this study’s results are directly relevant and applicable to the local context of KSDPP, they also highlight useful lessons and conclusions for the planning and evaluation of other long-standing and sustainable CBPR initiatives. The conceptual framework provides meaningful benchmarks to track evidence of progress in the context of CBPR. Findings from the study offer new ways of thinking about the evaluation of CBPR projects and their progress by drawing on frameworks that guide other forms of collective action.

Peer Review reports

Community-based participatory research (CBPR) is an approach to research that involves collective, reflective and systematic inquiry in which researchers and community stakeholders engage as equal partners in all steps of the research process with the goals of educating, improving practice or bringing about social change [ 1 , 2 , 3 ]. At its core, CBPR questions the power relationships that are inherently embedded in Western knowledge production, advocates for power to be shared between the researcher and the researched, acknowledges the legitimacy of experiential knowledge, and focuses on research aimed at improving situations and practices [ 3 ]. This approach to research is recognized as particularly useful when working with populations that experience marginalization – as is the case for some Indigenous communities—because it supports the establishment of respectful relationships with these groups, and the sharing of control over individual and group health and social conditions [ 3 , 4 ].

A longstanding challenge of CBPR has been to anchor evaluation and practice in a relevant and comprehensive theoretical framework of community change [ 4 , 5 , 6 , 7 , 8 ]. Given the complex causal web linking CBPR projects to specific health outcomes, traditional measurement strategies may neither be sensitive enough nor adequate to assess change and document successes or failure at the community level [ 6 , 9 , 10 ]. In addition, our understanding of the processes that link community-based collaborative action to changes in systemic determinants of health outcomes is still limited [ 6 , 8 ]. To date, most evaluative frameworks of CBPR have focused on the internal characteristics of coalitions and partnerships [ 7 , 11 ], provided general guidance on implementation steps [ 8 , 12 ] or used logic models to map out desired outcome categories [ 13 ]. There is a need to articulate specific, concrete and sequential evaluation benchmarks for CBPR in a detailed and theoretically consistent framework [ 6 ].

Social movements, generally viewed as large group actions that promote social change [ 14 , 15 ], share a set of common features with CBPR, such as aiming to reverse unequal relations of power by creating broad social, policy and systemic changes [ 4 , 16 , 17 ]. The field of social movement research has produced a vast array of theoretical approaches, providing substantial theoretical tools to understand and facilitate collective action and social change [ 14 , 15 , 18 , 19 , 20 , 21 ]. While many fields of research and action aimed at social betterment have been inspired by social movements [ 10 , 22 , 23 ], to our knowledge social movement theories have never been explicitly used to inform and better understand CBPR processes. We believe these theories can provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR.

As a first step in assessing the relevance of social movement theories to understanding CBPR, we conducted a framework synthesis of illustrative CBPR projects (8) using a multidimensional social movement theory-based framework [ 24 ]. This synthesis, presented elsewhere [ 24 ], resulted in the development of a multidimensional framework through which to conceive and map community change processes in the context of CBPR. In addition, our synthesis demonstrated the relevance of using modern social movement theories, such as resource mobilization theory [ 15 , 20 , 25 , 26 ], political process theory [ 14 , 20 , 21 , 27 ] and framing theory [ 14 , 28 , 29 , 30 ], to understand and examine CBPR processes. More specifically, it demonstrated that CBPR projects, like social movements, can be envisioned as collective processes evolving dynamically and iteratively through a four-stage lifecycle: (1) emergence, (2) coalescence, (3) momentum, (4) maintenance, consolidation, integration or decline. Key elements of this four-stage process include capitalizing on resources, opportunities, and building partnership and collaboration among different organizations and entities. Just like a social movement, CBPR also makes strategic use of collective framing processes to define a representation of a social problem (cause), mobilize around the cause as well as to define a collective action strategy leading to system changes addressing the problem [ 24 ]. Here, we draw on the conclusions of our previous work to design and evaluate a specific CBPR project.

Purpose of the study

The goal of the current study is to assess the community-level processes and intermediate outcomes of a longstanding CBPR initiative developed with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KSDPP), using a social movement theory perspective. More specifically, this research builds on a movement-building evaluation framework to assess the general process underlying KSDPP as well as intermediate outcomes related to core movement-building concepts. In keeping with the purpose of most evaluative research, this study aims to provide results that are directly relevant and applicable to KSDPP, but also to highlight useful lessons for CBPR planning and evaluation more broadly.

Conceptual framework

There are a range of evaluative frameworks and benchmarks used to assess social movement building, advocacy efforts and policy-change action [ 31 , 32 , 33 ]. Amongst them, Master and Osborn’s [ 31 ] comprehensive framework, which builds on a literature review of outcomes associated with social change, is particularly relevant for this study. Whereas many existing evaluative frameworks only provide end-of-project benchmarks, Master and Osborn’s framework provides a general perspective of how social movements can be conceived and allows for an meaningful exploration of movements’ development over time. This framework appeared particularly relevant to synthesize the most important concepts of social change.

Master and Osborn’s framework incorporates intermediate outcomes of five core components of movement building: base building and mobilization, leadership, vision, alliances, and advocacy infrastructure (Table  1 ). Each of these five components develop across four stages of movement building, facilitating a comprehensive and dynamic portrayal and assessment of a movement’s evolution over time. This comprehensive array of intermediate outcomes at different stages of a collective action process (distinct from impact outcomes related to a movement’s activities) are useful in the assessment of the development of a CBPR project over time.

The Kahnawake Schools Diabetes Prevention Project

Kahnawake is a north-eastern Kanien’kehá:ka (Mohawk) community of 7859 residents (2017) that is situated on the south shore of the St. Lawrence River, 10 miles from downtown Montreal (Quebec, Canada). The Kanien’kehá:ka are part of the Haudenosaunee, or “People of the Longhouse”, historically known as the Five Nations, or Six Nations Iroquois Confederacy. Traditional and cultural Haudenosaunee values emphasize collective thinking, shared responsibility, listening, taking into account the impact of current decisions on future generations, consensus decision-making, as well as a wholistic view of health, all of which provide a fertile ground for developing a CBPR project [ 34 ]. As a community, Kahnawake has demonstrated independence and autonomy in many domains, resulting in decentralization in the provision of a number of community services such as education, health, youth recreation programs for youth, and social services.

Despite this history of strength and independence, Kahnawake has been transformed by Western colonization, which has created social conditions that promote poorer food and lifestyle choices [ 35 ]. In 1985, two family physicians working in Kahnawake perceived high rates of Type 2 diabetes, and conducted a study to assess the prevalence of this condition in the community. Findings from the study showed that 12% of adults aged 45–64 had Type 2 diabetes, which was twice the rate of the general population [ 36 ]. Study findings also showed a high prevalence of diabetes related complications [ 37 , 38 ]. Based on these results, the physicians made a series of community presentations that raised awareness about diabetes, and shifted perceptions relating to the preventability of this disease [ 39 ]. Acting on this new awareness, community leaders mobilized and sought the expertise of academic researchers to develop a diabetes prevention program which became the Kahnawake Schools Diabetes Prevention Project (KSDPP), a CBPR project with a high degree of community involvement and ownership [ 40 , 41 , 42 ].

KSDPP aims to change the physical environment and social norms of the schools and community by promoting healthy eating and regular physical activity not only among children, but also parents, teachers, and all community members [ 43 , 44 ]. The project initially developed around a school-based component bolstered by community outreach interventions. The school-based component originally consisted of a health education curriculum delivered by teachers in Kahnawake elementary schools and a nutrition policy promoting healthy food choices at school. This policy was later expanded to include the promotion of physical activity and a whole range of healthy lifestyle activities. Community interventions include a variety of activities, many conducted in partnership with community organisations. The central goals of the community interventions are to create environments that support behavior change through activities tailored for parents, grand-parents and other community members [ 34 , 43 ]. While the program of activities is anchored in evidence-based theories of behavior and community change, the core of KSDPP’s actions are based on Kanien’kehá:ka values and traditions, and a wholistic view of health which incorporates the physical, emotional, mental and spiritual dimensions of life, true to a Haudenosaunee perspective of well-being [ 34 , 45 ]. For instance, the intervention’s primary target is elementary school children, which is consistent with the Kanien’kehá:ka value of taking responsibility to protect and promote the health of present and future generations (Seven Generations) [ 43 ]. The general approach of building supportive environments for health is in line with the Kanien’kehá:ka wholistic approach to education which takes into account the broader environment in which children develop [ 46 ]. In addition, KSDPP’s style of governance is deeply rooted in Kanien’kehá:ka values, which involve consensus in decision-making and a collective vision for the community [ 43 ].

Since the project’s inception, many studies have attempted to evaluate the impact of KSDPP on the health status and lifestyles of residents in the community. These studies have shown mixed results in the areas of physical activity, nutrition, weight and rates of diabetes [ 47 , 48 , 49 , 50 , 51 ]. The present study applies social movement concepts to expand and enrich this examination by identifying intermediate outcomes of KSDPP in the area of community mobilization and change, dimensions that are viewed as highly relevant and meaningful by KSDPP stakeholders. The goal of this research evaluation project was to develop a new understanding of KSDPP’s evolution, identify potential areas of improvement, and action paths for further mobilization of community workers and members around the issue of diabetes prevention. Results of the study were meant to inform the work of KSDPP and the greater Kahnawake community.

Research approach and design

We used a case study design, which is a systemic approach to qualitative research that allows the researcher to examine in depth the holistic nature of contemporary phenomena in natural contexts, with a multitude of data sources [ 52 , 53 ]. The case observed is the Kahnawake Schools Diabetes Prevention Project (KSDPP), bounded in time from its first ideation (around 1987) to present.

In accordance with KSDPP principles, this study builds on a community-based participatory approach, involving partnership building, regular exchange among partners, and experience sharing between the researchers, KSDPP intervention staff and the Community Advisory Board (CAB) [ 54 ]. This study uses an interpretivist perspective, which holds that reality is constructed through the meanings developed by social actors, including the investigators. Thus, findings emerged through dialogue and negotiation of interpretations between the researchers and stakeholders involved in this study.

In 2012, the first author approached KSDPP to explore their interested in the innovative idea of evaluating the community level processes and outcomes of KSDPP using social movement theories. As a result, the first author was invited to join the KSDPP research team as a postdoctoral investigator, attend monthly meetings of the CAB and the research team, and to engage in KSDPP activities and with the community of Kahnawake. As a settler, the first author did not have any previous research experience in partnership with an Indigenous community, and therefore sought to immerse herself in the culture and realities of the community. During her work, she was supervised by and benefited from the valuable advice, insight and knowledge of community leaders (AMG and AMC). The research proposal was designed and developed in full partnership with the KSDPP team to ensure cultural relevancy, and benefits for both KSDPP and the broader community. Stakeholders were involved in developing the research questions and methodology, as well as in data collection, the interpretation of findings and dissemination of results.

Data collection

Two data collection strategies were used in this case study (1) document review and (2) talking circles with four important stakeholder groups (data sources are described in Table  2 ).

Included in the review were documents that provided a comprehensive portrait of KSDPP’s evolution since 1994 in terms of key aspects of collective action such as leadership, community mobilization, KSDPP’s discourse and meta-narrative, alliance and partnerships, as well as program of activities. Documents reviewed were past and current KSDPP summaries of activity or work plans covering the years 1994 to 2016 ( n  = 12), as well as published scientific papers stemming from the project ( n  = 39). Organizational documents dating from before 2006 were only available in paper format and were digitized. Scientific publications that included KSDPP as one of a number of cases and published abstracts were discarded ( n  = 6), since these publications only provided shallow descriptions of KSDPP and redundant information. A list of all included publications is presented in Additional file  1 . Scientific and organizational documents were collected in January 2016 through direct solicitation, or downloaded from KSDPP and the research team websites ( ksdpp.org ; pram.mcgill.ca ) as well as a bibliographical database.

Talking circles are widely used to collect data in many Indigenous contexts, offering a means to collect data that encourages story-telling and collective listening – both important elements for sharing and gathering information within Indigenous contexts. Importantly, talking circles have been accepted by the Kahnawake community as a relevant data collection strategy. In a talking circle, participants sit in a circle and discuss specified topics until consensus is reached. An object (an eagle feather, a talking stick or a stone), is passed from one participant to another and the holder of the object has an opportunity to speak [ 55 ]. Talking circles were deemed useful in gathering stakeholder perceptions about the evolution of KSDPP, its collective action process and strategies, leadership, vision and partnerships. They also served to document the last stage of the project given the dearth of scientific publications after 2009. A talking circle guide, informed by the conceptual framework, was developed in partnership with the KSDPP team. This guide had questions about: (1) the importance of diabetes for the community; (2) the evolution of mobilization around diabetes in the community over the last 20 years; (3) community leaders (people or organizations) involved in diabetes prevention (4) perception of KSDPP and its impact over the last 20 years; (5) KSDPP’s vision (goal) (6) evolution of KSDPP’s action (7) community partners and collaborators of KSDPP; (8) strengths of KSDPP and actual challenges for diabetes prevention.

Participants involved in the study talking circles ( n  = 24) were also KSDPP stakeholders, i.e. individuals or groups with a vested interest in the focus of the evaluation or research [ 56 ]. They included: (1) KSDPP intervention staff and Community Advisory Board (CAB) members; (2) research team members; (3) community workers; (4) community members (see Table  2 for a full description). Recruitment of talking circle participants proceeded on a voluntary basis. Participants in the first two circles were recruited through a formal email invitation sent to current and past KSDPP staff members, CAB members and researchers, one month prior to the beginning of the study (the KSDPP team assisted in the creation of the lists). Participants in the remaining circles were recruited using general invitations mailed directly to a list of partner organizations created by the KSDPP team, announcements in the local newspaper, and direct solicitation of community members at community events, such as community walks.

In total, 5 talking circles were held between October and December 2015, each including 2 to 7 participants. In general, there was one talking circle for each stakeholder group, except the community worker group (group 3), which required 2 talking circles to fit the availability of participants. Talking circles were held in community facilities (community rooms and schools) over lunchtime to accommodate participants. Participants were provided with a light meal, which is a culturally appropriate manner in which to thank them for their participation. The average length of the talking circles, including the time spent explaining the study, was 2 h (range 1 h to 2 h 20 min). Talking circles provided a respectful and ordered structure through which to collect in-depth data, triangulate information, and build a common representation of events and times. Consensus was achieved when everyone felt that they could agree with the suggested statement. Following Kanien’kehá:ka decision making style, all participants came to ‘one mind’ as close as possible, all agreed to have a voice in the discussion.

Ethics approval and consent to participate

As with all KSDPP research projects, this project was conducted in accordance with the KSDPP Code of Research Ethics [ 57 ], which serves as a binding research agreement between the researchers and the community. Ethical approval was obtained first from the CAB and then from the McGill University ethics institutional review board. Participants in the talking circle provided individual written informed consent.

Data analysis

The analytic technique used in this study is framework analysis, a method for analysing primary data in applied social research that draws upon the work of Bryman and Burgess [ 58 ] and Miles and Huberman [ 59 ]. Framework analysis is useful for synthesizing knowledge from diverse sources [ 60 ]. This analysis technique typically involves five phases [ 61 ]: (1) familiarisation with the data; (2) identification of a relevant thematic framework; (3) application of the thematic framework by indexing all the data to specific themes; (4) organization of the data according to themes in a chart containing distilled summaries of views and experiences; (5) interpretation of findings, which involves mapping the range and nature of phenomena, creating typologies and finding association between themes.

Hard copies of publications (mostly organizational documents dated 2005 or earlier) were scanned and converted to PDF. All talking circles were audio recorded and transcribed verbatim. To perform the analysis, a database including all sources of data (full-text scientific papers, organisational documents, and transcripts from the talking circles) was constructed using QSR NVivo 11 [ 62 ]. Using the framework analysis method, the first author immersed herself in the data, identifying key ideas (mobilization, leadership, goal and vision, collaboration and partnership, activities and strategies), and then searched the literature for a relevant thematic framework. Our work in this phase was informed by the results of a framework synthesis we conducted previously that demonstrated the relevance of modern social movement theories in the study of CBPR projects [ 24 ]. For the current study, we chose to use Master and Osborn’s movement-building framework, which provides a means to examine the development of various components of social movements over time. Based on Master and Osborn’s framework, the first author developed a coding grid and performed sentence by sentence coding to assign text to specific themes (components and stages). At this stage, we also added an inductive component building on thematic analysis to identify potential new themes from the data [ 59 ]. All coded material was organized in a chart presenting summaries of views and experiences for each theme, and facilitating a comprehensive interpretation of KSDPP process and intermediate outcomes in terms of movement building.

The first author conducted the majority of the analysis, but all provisional interpretations were discussed with the KSDPP research team, staff and CAB members. Two formal data interpretation sessions were held to discuss interpretations, add context to information collected, and facilitate a better understanding of project documentation. For instance, during these sessions participants built consensus on the start and end dates of each stage, as well as markers of change for each period (referred to as “benchmarks” in the framework). The resulting interpretation was therefore consensual and co-created by the different team members. Construct and internal validity of the study were ensured by triangulation of data sources and methods, member checking, and the in-depth involvement of the researcher in the field. Finally, reliability of the study was improved by the development and use of a case study protocol and the development of database and a chain of evidence [ 52 ].

Results show an innovative and chronological perspective of KSDPP’s evolution as seen through a social movement lens, as well as intermediate outcomes associated with different dimensions of movement building achieved by this project over time. The inductive component of the analysis suggests new benchmarks pertaining to some movement-building components (bolded in the table). The dates proposed for each stage are approximate and should be understood as temporal benchmarks, as phases often overlap.

The next section outlines the different stages of KSDPP in narrative style, describing the important benchmarks reached, which are summarized in Table  3 .

The emergence of KSDPP: from early 1987 to mid-1997

The first stage of KSDPP, which we call emergence, began in 1987 when community leaders first evoked the idea of developing an intervention to prevent type 2 diabetes in Kahnawake [ 39 ].

The first stage emerged following a shift in the perception of diabetes following a lengthy community awareness-building process implemented from the mid- to late-1980s [ 39 , 43 ]. During this process, baseline research results were shared with the community shifting the perception of diabetes from being a personal issue to a community issue. The idea that diabetes could be prevented was slowly articulated in the late 1980s and early 1990s [ 39 ].

Volunteer community leaders, including elders and family physicians who raised the alarm about diabetes, invited academic researchers with expertise in community research to join the effort of elaborating a project proposal and developing a partnership [ 43 ]. After a few unsuccessful attempts, the team secured national research and intervention funding in 1994, and formally initiated the project [ 41 ]. One of the early exercises of the team consisted in elaborating operating guidelines and conditions for the participatory research process underlying KSDPP through a Code of Ethics [ 43 , 57 ]. “The process of creating a KSDPP partnership involving community researchers, academic researchers, and the community has been facilitated and strengthened by the joint development of a Code of Research Ethics during the first year of the project” [ 41 ].

The underlying philosophy of KSDPP (a participatory research process) was easily implemented because it converged with a Kanien’kehá:ka tradition of consensus decision-making [ 43 ]. At the same time, the partners also defined an inspirational and shared vision for Kahnawake that portrayed a community free of diabetes, living healthily and in wholistic balance. This vision, which laid the ground for the elaboration of strategic goals, was framed according to important cultural values of the Kanien’kehá:ka, such as a collective concern for the welfare of future generations (Seven Generations) and a wholistic philosophy of health [ 34 ]. As mentioned by one talking circle participant, in the first stage of KSDPP, collective reflection around the project, its goals and processes was highly important and helped set the stage for future steps:

“It took a year, a year and a half to prepare things once we had the grant. I remember saying things like ‘We need to do things, it takes time that we are out there. If we want to have an effect, we need to do things’. So we did such things as developing a code [of research ethics], a vision, developing all those kinds of things that take a lot of time, take a lot of discussion of participatory nature (…). I think that the way we did things put a very solid foundation; that what is sustained there, this kind of vision, this kind of relationship, the code of research ethics, and those kinds of things are traceable through those times.” (group 2)

KSDPP developed from a partnership that was initially formed through an alliance of professionals from the Kahnawake Education Centre, the Kateri Memorial Hospital Centre and Kahnawake Shakotiia’takehnhas Community Services (social family services), as well as researchers from McGill University and Université de Montréal. A talking circle participant (group 1) discussed the importance KSDPP’s roots in community: “I think that the grassroots connection that KSDPP has from the beginning is a very important strength. It’s the people from the community that… we, people in the community who are associated with KSDPP”. Over the first three years, the partnership recruited around 40 volunteers from multiple local organizations who formed the KSDPP Community Advisory Board (CAB) [ 43 ]. This CAB was (and is still) responsible for supervising all aspects of the project, from the design of the intervention through implementation and assessment. Through this new structure, “partnerships among local health, education, recreation, and community service organisations were formed, enhancing community participation” [ 41 ] as well as collaborative leadership.

In the first years of program implementation (1994–1997), the intervention team was staffed by two full-time community members, selected for their leadership and their role as agents for change [ 43 ]. As evoked by a talking circle participant (group 3), the choice of these persons was strategic, because they “came from the education system, so not only they were from the community but they were teachers so everyone knows them in that circle”. These staff members participated in formal training activities in order to acquire new skills in health promotion or enhance their competencies [ 41 ]. The program also provided many opportunities for collaborators to acquire new competencies. For instance, KSDPP supported the implementation of a new health curriculum in the elementary schools. While the curriculum was created by nurses and a nutritionist it was developed to be delivered by teachers (as opposed to health care professionals) who assumed full responsibility for the program in 1997 [ 46 ].

Coalescence of KSDPP: from mid-1997 to 2000

Beginning in August 1997, KSDPP experienced a series of events prompting the partnership to reinforce, take shape and deepen its ties in the community.

As the initial 3-year intervention and research grant was coming to an end in mid-1997, KSDPP began to seek new sources of support [ 41 ]. In June 1997, community partners (the Mohawk Council of Kahnawake, Kahnawake Shakotiia’takehnhas Community Services, and the Kahnawake Education Center) provided funds to enable the project to continue for one year (1997–1998) (funding was for the intervention component of KSDPP) [ 63 ]. These new funding partners, who were essentially new constituencies, were fully committed to the project. For talking circle participants (group 1), the fact that community partners provided funds for KSDPP to continue is an indicator of the value given to KSDPP by community stakeholders, who “were highly mobilized by the cause and pooled resources”. Following the year of community funding, continuing funds were secured from external private foundations (1999–2001).

Already at this stage, the participatory decision-making process and collaborative governance of the project were well established. In fact, study findings for that period point to a participatory democracy or non-hierarchical decision-making process as the primary mode of KSDPP governance [ 42 , 64 ]. For instance, it was reported that “The influence of multiple partners in determining the overall direction of KSDPP demonstrates the responsiveness and accountability of the egalitarian leadership style promoted by project staff” (p. 184) [ 64 ]. In addition, in one of the talking circles (group 3), a participant from a community organization and former CAB member described the way KSDPP invited partners to join the CAB, emphasizing the leadership style that KSDPP put in place:

“(KSDPP) went up there, spoke and invited people to come and sit on the Community [Advisory] Board… [this] was a place where your ideas were acceptable. Like you had to be the ones to write the terms of reference, you had to be the one for this mission, (...) it was always like a corporate thing.”

KSDPP’s coalescence was characterized by the translation of KSDPP’s vision into a full and workable action strategy that builds on, and integrates traditional and cultural values: “Activity implementation was embedded within an overall program intervention cycle directed towards promoting living in balance, in turn, a reflection of local cultural values” [ 34 ]. Living in balance, which “reflects being well in mind, body, emotion, and spirit” [ 34 ] is congruent with the Haudenosaunee wholistic approach of health [ 34 , 46 ]. By 1997, the team had established the core intervention activities and had experience implementing activities in the community [ 65 ]. Through collaboration community partners leveraged and optimized resources, shared responsibilities and supported each other’s efforts [ 65 ]. At that time, the partnership broadened to other community partners (such as teachers teaching the new curriculum in 1997) [ 46 ] thereby extending awareness and commitment to the cause of KSDPP (talking circle, groups 1): “At that time, teachers began to be more comfortable with the new curriculum, and were very committed to the cause”.

An analysis of programming approaches implemented in 1996–1997 reveals that half of the activities were conducted by KSDPP independently whereas half resulted from collaborative partnerships with community organizations [ 65 ]. Interestingly, this analysis “found that more than two thirds of collaborations occurred in response to invitations received by KSDPP from other community entities” [ 65 ]. In these collaborations, community members and organisations “brought their knowledge of the community, and contributed ideas on how best to carry out the activities in which they were involved” [ 41 ]. According to talking circle participants (group 1), trust and respect characterized the relationship with the education system at that time.

KSDPP’s moment: from 2001 to 2006

Based on its experience in the second stage, KSDPP developed into a stronger organization in the third stage, with well-established partnerships in the community, a well-oiled program of activities and significant community and political recognition. During this period, KSDPP became a leader in Canada for addressing diabetes prevention among First Nations communities [ 50 ].

In 2001, KSDPP secured major funding for 5 years from the Canadian Institutes of Health Research (CIHR), permitting the hire of an additional 4 people (including a public relations officer) and the development of the KSDPP Center for Research and Training in Diabetes Prevention [ 43 , 66 , 67 ]. This grant, which acknowledged KSDPP’s experience, expertise and leadership in diabetes prevention and community mobilization, allowed the organization to further community mobilization within Kahnawake, while developing a community mobilization training program to disseminate its intervention model to over 30 Indigenous communities across Canada (from 2001 to 2014) [ 68 ]. Inside its own community, KSDPP also reached a high level of credibility owing to its participatory approach, as emphasized by some participants: “I think [that] a lot of the development of KSDPP was done alongside community members so it taught us to have credibility in community” (group 1). “The other organizations within the community have come around recognizing the central role that KSDPP can play in [health promotion and diabetes prevention]” (group 2). At that time, “KSDPP’s visibility in and acceptance by the community suggests that it is perceived as an accessible community resource for health promotion” [ 65 ].

During this stage KSDPP’s leaders acquired external recognition from public institutions. For example, in 1999, a KSDPP staff member who was also a community researcher was elected to the Board of Directors of the Canadian National Aboriginal Diabetes Association (NADA), serving as vice-chairperson until 2002 and eventually chairperson from 2002 to 2004. In the years 1999–2001, a physician-researcher deeply involved in KSDPP’s formation and work was elected president of the North American Primary Care Research Group (NAPCRG). She was key in the development of a new policy promoting participatory research in this international organization. In 2010, KSDPP received a Partnership Award from the Canadian Institutes of Health Research for their exemplary work [ 69 ]. Even if not specific to the third stage, this award recognized the strength of KSDPP’s work in these times, as well as its contribution to developing ethical agreements with Indigenous communities.

From 2001 to 2006, with funding from the CIHR and the National Aboriginal Diabetes Initiative (Health Canada), KSDPP became active on many levels and continued to extend its reach and vision [ 41 , 70 ]. As indicated in a scientific article describing KSDPP over this period, “this programme has grown, it has sustained itself and enriched itself in interaction with the community (…)” [ 41 ]. KSDPP’s staff disseminated information about the program locally, nationally and internationally by participating in national forums addressing diabetes and health issues for Indigenous people [ 41 ]. Inside the community, a KSDPP public relationship office was created to actively disseminate KSDPP’s news through radio shows, newsletters and other means of communication [ 70 ] (talking circle, group 1). In 2000, the local Onkwata’karitáhtshera Health and Social Service Research Council was created by the community health board to act as the community ethics board for all health and social research conducted in Kahnawake. This entity acknowledged KSDPP’s CAB as a valid and autonomous ethics authority to evaluate proposals for diabetes prevention research, and added KSDPP’s Code of Research Ethics to its original research agreement terms (talking circles, groups 1 and 2).

At that time, most activities of KSDPP were already collaborative in nature [ 34 ], capitalizing on a core of partner organizations that have “taken KSDPP to work together more or less systematically” (talking circle – group 2). They also developed new partnerships with organizations in the private sector of the community, including a local computer software company [ 66 ]. Collaborating with new partners allowed “the creation and production of new activities and activity tools (e.g., diabetes awareness booth, cooking demonstrations with students)” [ 34 ]. Respect among partners has allowed the program to consistently evolve: “Because each partner’s voice was heard and respected, constructive negotiation occurred allowing transformations in the programme in a way that did not threaten its identity” [ 41 ].

KSDPP’s momentum was characterized by the full achievement of its collective action strategy, building on a core program of activities that achieved maturity with the addition of other activity components. A paper describing KSDPP at this period emphasizes that the project “evolved by increasing both the reach and intensity of healthy living interventions” [ 43 ]. In addition to the core activities, KSDPP’s program expanded to include preschool children and also engaged adolescents in youth empowerment projects through the community high school [ 66 ]. By 2003, there were more than 100 different interventions per year, many in partnership with other community organizations [ 66 ]. A descriptive case study of KSDPP at this period highlights that: “There is continuous momentum in active participation of community members involved in diverse activities ranging from research to supporting interventions” [ 66 ].

KSDPP’s maintenance, integration and consolidation: from 2007 to present

The current stage of KSDPP can be characterized by the emergence of a new form of leadership, resource constraints, lower levels of community mobilization and sensitiveness to KSDPP’s message, as paradoxically KSDPP’s vision and goals have become more integrated inside the community and within the agendas and priorities of partner organisations.

Major decreases in funding since 2006 have resulted in the majority of the staff, including the public relations position, retiring from the project. This made it difficult for KSDPP to keep the momentum going in mobilizing the community, as explained by a participant: “(…) To me, [KSDPP brought] very positive changes, but then I guess because of decreased funding and decreased staff, the momentum didn’t keep going” (group 3). According to talking circle participants (group 1), the administrative environment in the community became less supportive of KSDPP activity. Decreases in resources, coupled with a lack of innovation, rendered KSDPP less visible. This phenomenon was highlighted by some community participants (group 4): “When it was very popular, like in the first years… the people knew about it, they were active in schools… Some people didn’t like some of the ideas they were bringing, but it was more known and now it’s very quiet, we don’t hear about it anymore”. An hypothesis evoked is that KSDPP’s action became so integrated into the community that it appeared less noticeable to community members. One participant (group 1) mentioned that “[KSDPP] has become part of the social fabric in the community”, which is, paradoxically, a form of success.

The current stage is characterized by the rise of a new generation of leaders in different parts of the partnership, including the KSDPP research team and KSDPP intervention staff. From a research team perspective, since 2006 the research team has been involved in smaller research projects (many led by postgraduate students, under the supervision of the KSDPP research team) and has included new determinants of diabetes prevention (i.e. food security, adequate sleep) (talking circle, group 2). From a staff perspective, this era is also seen as a turbulent one, with high levels of staff turnover and hiring based on programmatic activity and the availability of funding. New staff members have brought a fresh perspective on the KSDPP collective action strategy and vision, providing renewed energy, all the while ensuring continuity in KSDPP’s overall work (talking circle, group 1). As explained by one participant (group 3): “There have been many different people, different staff over the years, but I see now there are a few new young [people] who work for KSDPP and I see the exact same strength. It’s the way that they’re part of the community and the way that they go and mobilize all their contacts within the community”.

During this stage, the vision promoted by KSDPP (a healthy community, free of diabetes) and the norm underlying this vision (diabetes is a preventable disease) appeared as successfully disseminated in the community. Some participants described this shift in beliefs and norms: “There was a whole change (...), this idea of diabetes being preventable has now become the normal way of thinking…”(group 1). “I remember (...) people coming in and teaching you different things about eating healthier and being healthier and being active, it was sort of like new to us. And now it’s like normal for all the kids to have a nutrition policy in the schools” (group 4). Talking circle participants involved directly in KSDPP (group 1 and 2) were unambiguous about the role the project played in promoting this vision: “KSDPP certainly played the role of that catalyst [for diabetes prevention] in the community” (group 1). “KSDPP was the catalyst to the whole movement. They were the ones that caused this whole spark and this whole awareness and this [desire] to do something about it and the energy that just infiltrated the whole community” (group 2). However, the vision is still not shared by everyone in the community, with some interpreting KSDPP’s message and efforts to implement it as a form of policing: “(…) [some community organizations] have sodas and junk food and things like that in their vending machines. And again, it’s that response ‘It’s our choice to do that” (talking circle, group 1). “I think that there’s part of the population that think that health promotion and diabetes prevention is important but there’s a part of the population that don’t wanna hear about it” (talking circle, group 4).

Regarding the issue of collaboration, KSDPP has allowed many partners to build capacity, and these partners are now taking over some of the responsibilities initially held by KSDPP. For instance, a Masters student research project led to the development and implementation of a physical activity policy in the elementary schools (2011–2013) and a PhD student project conducted in collaboration with a multi-sectorial committee contributed to the development of an active school transportation project (2013–2015). These projects involved representatives of partner organizations, who are now assuming the leadership of these initiatives [ 71 , 72 ]. A staff member mentioned: “It’s intentionally with everything KSDPP does… we’re working this way, we’re putting ourselves in with everyone else, intentionally trying to mobilize people to take ownership of these issues for themselves” (group 1).

KSDPP’s continuous action has resulted in the integration of its collective action agenda, i.e. fostering healthy eating and physical activity, in some partnering organisations. For instance, the physical activity policy (2011–2013) was developed in close collaboration with the community elementary schools [ 73 ]. Participants emphasized the pervasiveness of KSDPP’s agenda on partner organisations: “People have talked about the importance of the wellness policies in the schools and I have a very strong feeling that those would never ever have happened in the early years of KSDPP” (group 2). “KSDPP as a separate entity is able to challenge either the utility of that direction or to explore other areas that perhaps the organisations aren’t focusing on at the moment” (group 1). However, participants (group 1) recognize that there is still resistance from some sectors of the community and some participants (group 2) highlighted the need to build stronger collaborations with some health organizations in the community to get funding instead of competing with each other.

New proposed benchmarks

Findings from the study point to potentially new benchmarks in the examination and assessment of the development of KSDPP (bolded in Table  3 ). For instance, in the third stage, a recurrent theme in the “vision and frames” component was broader dissemination of the KSDPP vision and approach across levels of implementation (i.e. local, national and international). This phenomenon has been emphasized both in KSDPP publications over this period, and by KSDPP stakeholders in the talking circles. We therefore propose that broadening dissemination of a project’s vision might be a significant benchmark at this stage. Using the same rationale, additional benchmarks are proposed for stage 3 (Alliances, partnerships, networks; Advocacy agenda and action strategy) and stage 4 (Base building and mobilization; Alliances, partnerships, networks).

KSDPP’s areas of potential improvement

By comparing the actions and processes of KSDPP to the chosen theoretical framework, this analysis has exposed potential areas of improvement for the initiative.

First, and as emphasized by participants, is the question of continuing leadership: “Looking ahead, [one thing to do] is nurturing the torch bearers for health promotion, diabetes prevention. I don’t know if we have enough of those still generated from KSDPP (…) We served our term and beyond (…) and there needs to be more.” (group 2). Even if some evidence shows a renewing of the research and intervention leadership in KSDPP, there is still some room to plan and foresee the future of the partnership leadership, which is essential in avoiding stagnation or dissipation in a movement. Such an exercise could involve “creating time for intellectual and spiritual reflection by leaders as well as a commitment to training a new generation of leadership” [ 74 ].

Second is the need to continuously review and redefine the partnership’s vision and strategies. For instance, one talking circle participant (group 1) suggested broadening the vision and collective action strategy to focus more generally on wellness: “I think one area that we have talked about is the area of wellness in general (…). I think KSDPP started where it was safe, around physical activity and healthy eating (...) we’ve already started to work with stress, mental health and wellness. So is this an area that KSDPP will develop more fully in the future?” Along similar lines, some participants (groups 3 and 4) suggested finding more efficient strategies to ingrain healthy behaviours in children, such as more systematic and direct engagement with parents: “I think sometimes where we miss the mark is that it was aimed primarily at the schools, but it’s the parents who are the role models, it’s the parents who are making the purchases of the food in the home and maybe sometimes there should be more emphasis put on the parents than on the children” (group 3). As suggested by some participants (group 2), renewing KSDPP strategies may also require scaling up or developing further alliances with the political and economic sectors of the community so as to tackle political and systemic determinants of diabetes prevention and health promotion that can’t be addressed by KSDPP alone:

“Something that we talked about (...) is working with the economic sector of the community on health promotion. (...) Because if we look at the people that are selling food, are providing food services, we know that they are supplying demand; the community is demanding salt, fat, sugar, carbs, etcetera. We want them to shift to something else but we always backed off from them.”

The end of this study coincided with KSDPP’S strategic planning exercise (“strategic conversations” with key community actors and members). The first author was invited to participate in the design of these conversations and integrated the results of this study, including potential area of improvement and action paths, in this reflection.

This framework analysis, based on a social movement-building framework [ 31 ], portrays the development of KSDPP in a four-stage process of emergence, coalescence, momentum and maintenance/integration; each stage assessed by the achievement of intermediate outcomes, and influenced at different levels and by different kinds of resources, and mobilization, partnership and collective action activities. Based on the framework benchmarks, we conclude that KSDPP has reached the last stage of movement-building, which is the maintenance and integration stage into the Kahnawake community.

Based on this analysis, we can see that KSDPP’s overall reach has expanded from its original vision which was focused on diabetes prevention. Framing KSDPP as a social movement, this study points to other significant processes and outcomes, such as creating awareness; shifting norms and beliefs about diabetes in the community; fostering community mobilization, collaboration and leadership around this issue; building community capacity, skills and expertise in diabetes prevention; creating culture of collaboration and resource sharing among community organizations and permeating the diabetes prevention agenda into other organizations. Previous studies that have looked at KSDPP’s outcomes have tended to provide a mixed picture of the project’s impact on health and the behaviors of residents. One could say that the design of these studies may have failed to capture events and trends in the broader context that influence people’s behaviors and health, such as the introduction of satellite television in the community in 2008, the increasing availability of fast-food restaurants over the last 20 years, as well as strong positive secular trends in the prevalence of obesity [ 47 ]. We believe that studies with an exclusive focus on health outcomes pose paradoxes to the very nature of CBPR, which is based on the ecological premise that “an individual’s behavior is shaped by a dynamic interaction with the social environment” [ 6 ]. In addition, community-level changes and processes in their own constitute valuable outcomes, and they sometimes have a “more profound impact on well-being than did the intended outcomes of planned interventions” [ 5 ]. Our study highlights important community-level processes and outcomes in Kahnawake, which can be considered as transitional steps towards health improvement.

A movement-building framework such as that by Masters and Osborn [ 31 ] is an applicable and innovative tool with which to understand and assess CBPR projects. Although the movement-building framework has been applied retrospectively in the current study, it can be used prospectively to encourage ongoing reflection and assessment in the context of CBPR [ 31 ]. Using the framework retrospectively can help coalitions situate and assess themselves with respect to the collective action they led and the progress made over the years. Using the framework prospectively can assist coalitions plan ahead by providing general guidance about aspects of the action that are important at a specific moment. While the phases of the framework are modeled on social movement development stages, they nonetheless provide useful markers to assess the development and progress of CBPR projects and other collective action strategies over time, Furthermore, the core concepts of movement-building (i.e. base building and mobilization; leadership; vision and frames; alliances, partnerships, networks; advocacy agenda and action strategy) resonate with the CBPR approach and allow an identification and examination of core CBPR processes and action. Moreover, the benchmarks associated with each phase help identify key accomplishments at each stage as well as areas where additional efforts need to be focused. For instance, it suggests that in the second stage (coalescence) of development, CBPR teams should not expect to pervade the agendas of collaborating organizations, but should rather focus on refining collective action goals; in addition, CBPR leaders should not expect to be recognized from the base, but rather should work at building and expanding core collaboration.

However, while the framework offers a number of distinct intermediate goals on which to focus, it does not provide strategies with which to achieve these goals, which might be a limitation to translating findings into implementation. For example, in the third stage (movement’s moment) of implementation the movement/CBPR project is supposed to see “public support of the meta-narratives increase”, but the framework doesn’t specify how to achieve this benchmark; it only offers examples of trackable progress.

We believe that social movement frameworks, such as the one used in this study, apply particularly well to long-standing, sustainable community-based projects. However, it is important to acknowledge that these frameworks may not be useful or relevant to all CBPR projects. In the case of KSDPP, the specificities of Kahnawake and the Mohawk culture favored the emergence of this form of large, sustainable community-based projects – one that is similar to social movements.

The current study assessed the processes and intermediate outcomes of the Kahnawake Schools Diabetes Prevention Project using a social movement building framework. This framework analysis describes the development of KSDPP’s in a four-stage process, each stage defined and described by the achievement of important intermediate outcomes and the identification of potential areas of improvement. The framework’s central concepts provide useful markers to situate long-standing and sustainable CBPR projects within its own life course, and inform the development of recommendations to provide guidance for future action. This study proposes some innovative insights regarding the evaluation of CBPR projects and the assessment of their progress by building on their similarities with other forms of collective action.

Abbreviations

Community Advisory Board

• Community-based participatory research

Canadian Institutes of Health Research

Kahnawake Schools Diabetes Prevention Project

National Aboriginal Diabetes Association

North American Primary Care Research Group

Green LW, George MA, Frankish DM, Herbert CJ, Bowie WR, O’Neill M. Recherche participative et promotion de la santé: Bilan et recommandations pour le développement de la recherche participative en promotion de la santé au Canada. Ottawa: Société royale du Canada; 1995.

Google Scholar  

Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.

Article   CAS   PubMed   Google Scholar  

Baum F, MacDougall C, Smith D. Glossary: participatory action research. J Epidemiol Community Health. 2006;60(10):854–7.

Article   PubMed   PubMed Central   Google Scholar  

Cargo M, Mercer SL. The value and challenges of participatory research: strengthening its practice. Annu Rev Public Health. 2008;29:325–50.

Article   PubMed   Google Scholar  

Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, Sirett E, Wong G, Cargo M, Herbert CP, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012;90(2):311–46.

Merzel C, D’Afflitti J. Reconsidering community-based health promotion: promise, performance, and potential. Am J Public Health. 2003;93(4):557–74.

Wallerstein N, Oetzel J, Duran B, Tafoya G, Belone L, Ra R. What predicts outcomes in CBPR? In: Minkler M, Wallerstein N, editors. Community-based participatory research for health: from processes to outcomes. San Franscico: Jossey-Bass; 2008. p. 317–92.

Fawcett S, Schultz J, Watson-Thompson J, Fox M, Bremby R. Building multisectoral partnerships for population health and health equity. Prev Chronic Dis. 2010;7(6):A118.

PubMed   PubMed Central   Google Scholar  

McQueen DV, Anderson LM. What counts as evidence: issues and debates. WHO Reg Publ Eur Ser. 2001;92:63–81.

Nutbeam D. Evaluating health promotion-progress, problems and solutions. Health Promot Int. 1998;13(1):27–44.

Article   Google Scholar  

Schulz AJ, Israel BA, Lantz P. Instrument for evaluating dimensions of group dynamics within community-based participatory research partnerships. Eval Program Plann. 2003;26(3):249–62.

Institute of Medicine. Community. In: The future of the public’s health in the 21st century. Washington (DC): National Academies Press; 2003.

Fawcett SB, Sterling TD, Paine-Andrews A, Francisco VT, Richter KP, Williams E, Copple B. Evaluating community efforts to prevent cardiovascular diseases. Atlanta: Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion; 1995.

Horn J. Gender and social movements overview report. In: Cutting edge. Brighton: Institute of Development Studies; 2013. p. 115.

Jenkins JC. Mobilization theory and the study of social movements. Annu Rev Sociol. 1983;9(1983):527–53.

Israel BA, Schultz J, Parker E, Becker AB, Allen AJ, Guzman JR. Critical issues in developing and following community based participatory research principles. In: Minkler M, Wallerstein N, editors. Community-based participatory research for health. San Francisco: Jossey-Bass; 2003.

Velasquez J, Knatterud-Hubinger N, Narr D, Mendenhall T, Solheim C. Mano a Mano: improving health in impoverished Bolivian communities through community-based participatory research. Fam Syst Health. 2011;29(4):303–13.

Wilkinson P. Social movements. London: Pall Mall; 1971.

Book   Google Scholar  

Tilly C. From mobilization to revolution. Reading: Addison Wesley; 1978.

McAdam D, McCarthy JD, Zald MN. Comparative perspectives on social movements. Boston: Cambridge University Press; 1996.

Mueller CM. Frontiers in social movement theory. In: Morris AD, Mueller CM, editors. Building social movement theory. New Haven: Yale University Press; 1992.

Maton KI. Making a difference: the social ecology of social transformation. Am J Community Psychol. 2000;28(1):25–57.

Minkler M, Wallerstein N. Improving health through community organization and community building. In: Minkler M, editor. Community organizing and community building for health. New Brunswick; New Jersey; London: Rugters University Press; 1997. p. 30–52.

Tremblay MC, Martin DH, Macaulay AC, Pluye P. Can we build on social movement theories to develop and improve community-based participatory research? A framework synthesis review. Am J Community Psychol. 2017;59(3–4):333–62.

Jenkins JC, Perrow C. Insurgency of the powerless: farm worker movement (1946-1972). Am Sociol Rev. 1977;42:249–68.

Oberschall A. Social conflict and social movements. Englewood Cliffs: Prentice-Hall; 1973.

Goodwin J, Jasper JM. Caught in a winding, snarling vine: the structural Bias of political process theory. Sociol Forum. 1999;14:1.

Benford RD, Snow DA. Framing processes and social movements: an overview and assessment. Annu Rev Sociol. 2000;26:661–39.

Gamson WA. The social psychology of collective action. In: Morris AD, Mueller CM, editors. Frontiers in social movement theory. New Haven: Yale University Press; 1992. p. 53–76.

De la Porta D, Diani M. Social movements: an introduction. 2nd ed. Malden: Blackwell Publishing; 2006.

Masters B, Osborn T. Social movements and philanthropy: how foundations can support movement building. Found Rev. 2010;2(2):12–27.

Asian Communities for Reproductive Justice. Movement building indicators. Oakland: ACRJ; 2009.

Reisman J, Gienapp A, Stachowiak S. A guide to measuring policy and advocacy. Organizational Research Services: Seattle; 2007.

Delormier T, Cargo M, Kirby R, McComber A, Rice J, Potvin L. Activity implementation as a reflection of living in balance. Pimatziwin: J Aborig Indigenous Community Health. 2003;1(1):142–63.

Hovey R, Delormier T, McComber AM. Social-relational understandings of health and well-being from an indigenous perspective. Int J Indigenous Health. 2014;10(1):35–54.

Montour LT, Macaulay AC. High prevalence rates of diabetes mellitus and hypertension on a north American Indian reservation. Can Med Assoc J. 1985;132(10):1110.

CAS   PubMed   PubMed Central   Google Scholar  

Montour LT, Macaulay AC, Adelson N. Diabetes mellitus in Mohawks of Kahnawake, PQ: a clinical and epidemiologic description. CMAJ. 1989;141(6):549–52.

Macaulay AC, Montour LT, Adelson N. Prevalence of diabetic and atherosclerotic complications among Mohawk Indians of Kahnawake, PQ. CMAJ. 1988;139(3):221–4.

Bisset S, Cargo M, Delormier T, Macaulay AC, Potvin L. Legitimizing diabetes as a community health issue: a case analysis of an aboriginal community in Canada. Health Promot Int. 2004;19(3):317–26.

Cargo M, Delormier T, Lévesque L, Horn-Miller K, McComber AM, Macaulay AC. Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership. Health Educ Res. 2008;23(5):904–14.

Potvin L, Cargo M, McComber A, Delormier T, Macaulay AC. Implementing participatory intervention and research in communities: lessons from the Kahnawake schools diabetes prevention project in Canada. Soc Sci Med. 2003;56(6):1295.

Cargo MD, Delormier T, Lévesque L, McComber AM, Macaulay AC. Community capacity as an “inside job”: evolution of perceived ownership within a university-aboriginal community partnership. Am J Health Promot. 2011;26(2):96–100.

Macaulay AC, Cargo M, Bisset S, Delormier T, Lévesque L, Potvin L, McComber AM. Community empowerment for the primary prevention of type 11 diabetes: Kanien’kehá:ka (Mohawk) ways for the Kahnawake schools diabetes prevention project. In: Ferreira ML, Lang GC, editors. Indigenous peoples and diabetes: community empowerment and wellness. Durham: Carolina Academic Press; 2006. p. 407–58.

Bush PL, Hamzeh J, Macaulay AC. Community-based participatory research. Oxford Bibliographies. Retrieved 10 Apr. 2018, from http://www.oxfordbibliographies.com/view/document/obo-9780199756797/obo-9780199756797-0126.xml .

Murdoch J, Tremblay M-C, Hovey R, Delormier T, Gray-Donald K, Delaronde E, Macaulay AC. 2017. Understanding how Indigenous culturally-based interventions can improve participants’ health in Canada. Health Promotion International. Published online September 14th, 2017. https://doi.org/10.1093/heapro/dax059 .

Cargo M, Salsberg J, Delormier T, Desrosiers S, Macaulay AC. Understanding the social context of school health promotion program implementation. Health Educ. 2006;106(2):85–97.

Paradis G, Levesque L, Macaulay AC, Cargo M, McComber A, Kirby R, Receveur O, Kishchuk N, Potvin L. Impact of a diabetes prevention program on body size, physical activity, and diet among Kanien’keha:ka (Mohawk) children 6 to 11 years old: 8-year results from the Kahnawake schools diabetes prevention project. Pediatrics. 2005;115(2):333–9.

Jimenez MM, Receveur O, Trifonopoulos M, Kuhnlein H, Paradis G, Macaulay AC. Comparison of the dietary intakes of two different groups of children (grades 4 to 6) before and after the Kahnawake schools diabetes prevention project. J Am Diet Assoc. 2003;103(9):1191–4.

Horn OK, Jacobs-Whyte H, Ing A, Bruegl A, Paradis G, Macaulay AC. Incidence and prevalence of type 2 diabetes in the first nation community of Kahnawá: ke, Quebec, Canada, 1986-2003. Can J Public Health. 2007;98(6):438–43.

PubMed   Google Scholar  

Salmon L. Contribution of foods to nutrient intakes of grades 4–6 students participating in Kahnawake schools diabetes prevention project 1994, 1998 and 2002. Montreal: McGill University; 2004.

Trifonopoulos M, Kuhnlein HV, Receveur O. Analysis of 24-hour recalls of 164 fourth-to sixth-grade Mohawk children in Kahnawake. J Am Diet Assoc. 1998;98(7):814–6.

Yin RK. Case study research: design and methods. 4th ed. Thousand Oaks: Sage Publications; 2009.

Stake RE. The art of case study research. Thousand Oaks: Sage; 1995.

Macaulay AC, Cross EJ, Delormier T, Potvin L, Paradis G, McComber A. Developing a Code of Research Ethics for research with a Native community in Canada: a report from the Kahnawake Schools Diabetes Prevention Project. Int J Circumpolar Health. 1998;57(Suppl 1):38-40.

Struthers R, Hodge FS, Geishirt-Cantrell B, De Cora L. Participant experiences of talking circles on type 2 diabetes in two Northern Plains American Indian tribes. Qual Health Res. 2013;13(8):1094–115.

Cousins JB, Whitmore E. Framing participatory evaluation. N Dir Eval. 1988;80(Winter 1988):5–23.

Kahnawake Schools Diabetes Prevention Project. Code of research ethics. Kahnawá:ke: Kahnawake Schools Diabetes Prevention Project; 2007.

Bryman A, Burgess RG. Analyzing qualitative data. London: Routledge; 1994.

Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thousand Oaks: Sage; 1994.

Pope C, Mays N, Popay J. Synthesising qualitative and quantitative health evidence: a guide to methods. UK: McGraw-Hill Education; 2007.

Pope C, Ziebland S, Mays N. Qualitative research in health care: analysing qualitative data. Br Med J. 2000;320(7227):114–6.

Article   CAS   Google Scholar  

NVivo qualitative data analysis software. Version 11. [ http://www.qsrinternational.com /]. Accessed 11 Apr 2018.

Macaulay AC, Delormier T, McComber AM, Cross EJ, Potvin LP, Paradis G, Kirby RL, Saad-Haddad C, Desrosiers S. Participatory research with native community of Kahnawake creates innovative code of research ethics. Can J Public Health. 1998;89(2):105–8.

CAS   PubMed   Google Scholar  

Cargo M, Levesque L, Macaulay AC, McComber A, Desrosiers S, Delormier T, Potvin L, Kahnawake Schools Diabetes Prevention Project Community Advisory B. Community governance of the Kahnawake schools diabetes prevention project, Kahnawake territory, Mohawk nation, Canada. Health Promot Int. 2003;18(3):177–87.

Lévesque L, Guilbault G, Delormier T, Potvin L. Unpacking the black box: a deconstruction of the programming approach and physical activity interventions implemented in the Kahnawake schools diabetes prevention project. Health Promot Pract. 2005;6(1):64–7.

Macaulay AC, Harris SB, Lévesque L, Cargo M, Ford E, Salsberg J, McComber A, Fiddler R, Kirby R, Hanley AJG, et al. Primary prevention of type 2 diabetes: experiences of 2 aboriginal communities in Canada. Can J Diabetes. 2003;27(4):464–75.

KSDPP. KSDPP annual summary of activities. Kahnawake: Kahnawake Schools Diabetes Prevention Project; 2002. p. 6.

KSDPP. KSDPP annual summary of activities. Kahnawake: Kahnawake Schools Diabetes Prevention Project; 2014. p. 6.

KSDPP. KSDPP annual summary of activities. Kahnawake: Kahnawake Schools Diabetes Prevention Project; 2010. p. 6.

KSDPP. KSDPP annual summary of activities. Kahnawake: Kahnawake Schools Diabetes Prevention Project; 2001. p. 6.

Macridis S, García Bengoechea E, McComber AM, Jacobs J, Macaulay AC, The Kahnawake Schools Diabetes Prevention Project’s School Travel Planning Committee. Active transportation to support diabetes prevention: expanding school health promotion programming in an indigenous community. Eval Program Plann . 2016; In press.

Salsberg J, Parry D, Pluye P, Macridis S, Herbert CP, Macaulay AC. Successful strategies to engage research partners for translating evidence into action in community health: a critical review. J Environ Public Health. 2015;2015:191856.

Hogan L, Bengoechea EG, Salsberg J, Jacobs J, King M, Macaulay AC. Using a participatory approach to the development of a school-based physical activity policy in an indigenous community. J Sch Health. 2014;84:786–92.

Ortiz R, Pastor M. Making change: how social movements work and how to support them. Los Angeles: Program for Environmental and Regional Equity; University of Southern California; 2009. p. 55.

Download references

Acknowledgements

MCT gratefully thanks the Kahnawake Schools Diabetes Prevention Project and the community of Kahnawake for their support and their contribution to this project. Special thanks are owed to Judi Jacobs (KSDPP general manager), who provided a helpful support with data collection logistics and community research review. The authors wish to acknowledge the contribution of Selma Chipenda-Dansokho, who carefully reviewed the manuscript for English.

MCT was awarded a postdoctoral fellowship from the Canadian Institutes of Health Research, Research in First Nations, Métis and/or Inuit Health (302299).

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to the KSDPP research agreement, but are available from KSDPP on reasonable request ([email protected]). KSDPP retains ownership of all data, and control over data and their use is managed by the KSDPP Community Advisory Board. Scientific publications analyzed in this study is presented in Additional file  1 .

Author information

Authors and affiliations.

Department of Family Medicine and Emergency Medicine, Office of Education and Continuing Professional Development, Université Laval, 1050, de la Médecine, Pavillon Ferdinand-Vandry, 2881-F, Québec, QC, G1V 0A6, Canada

Marie-Claude Tremblay

School of Health and Human Performance, Dalhousie University, Halifax, NS, Canada

Debbie H. Martin

Kahnawake Schools Diabetes Prevention Project, Kahnawake, QC, Canada

Alex M. McComber & Amelia McGregor

Department of Family Medicine, McGill University, Montreal, QC, Canada

Alex M. McComber & Ann C. Macaulay

You can also search for this author in PubMed   Google Scholar

Contributions

This research has been first designed and developed by the principal author (MCT) in collaboration with co-authors (AM, DH, AMC) and KSDPP. MCT mainly collected the data and carried out the first analysis. Results have been interpreted and discussed by all authors (MCT, AM, DH, AMC, AMG). MCT wrote a first version of the paper. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Marie-Claude Tremblay .

Ethics declarations

As with all KSDPP research projects, this project has been conducted in accordance with the KSDPP Code of Research Ethics ( http://www.ksdpp.org/elder/code_ethics.php ), which serves as a binding research agreement between the researcher and the community. Full ethical approval was obtained first from the Community Advisory Board of KSDPP and then from the McGill University ethics institutional review board (project A11-B52-14A). Participants in the talking circle provided individual written informed consent.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Additional file

Additional file 1:.

List of scientific and organisational documents included in the document review (n = 51). (DOCX 25 kb)

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Cite this article.

Tremblay, MC., Martin, D.H., McComber, A.M. et al. Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project. BMC Public Health 18 , 487 (2018). https://doi.org/10.1186/s12889-018-5412-y

Download citation

Received : 08 May 2017

Accepted : 05 April 2018

Published : 12 April 2018

DOI : https://doi.org/10.1186/s12889-018-5412-y

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Social movements
• Collective action
• Process evaluation
• Program evaluation
• Indigenous health
• Health promotion
• Diabetes prevention

BMC Public Health

ISSN: 1471-2458

• General enquiries: [email protected]

• Research article
• Open access
• Published: 30 March 2021

Exploring community engaged research experiences and preferences: a multi-level qualitative investigation

• Hae-Ra Han   ORCID: orcid.org/0000-0002-9419-594X 1 , 2 , 3 ,
• Ashley Xu 1 ,
• Kyra J. W. Mendez 1 ,
• Safiyyah Okoye 3 ,
• Joycelyn Cudjoe 4 ,
• Mona Bahouth 1 , 5 ,
• Melanie Reese 2 , 6 ,
• Lee Bone 2 , 3 &
• Cheryl Dennison-Himmelfarb 1 , 2  

Research Involvement and Engagement volume  7 , Article number:  19 ( 2021 ) Cite this article

19k Accesses

29 Citations

10 Altmetric

Metrics details

Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research.

The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research . A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis.

Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. “checking the box”; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research.

The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed.

Peer Review reports

Plain ENGLISH summary

Involving communities in the research process can make better the way research is planned, carried out, and used. With growing interest and support for community engagement, it is important to understand the views and insights of people who experienced community engaged research. To explore the key lessons learned by community engaged research teams, we held five group interview sessions with 50 research investigators, research staff, and community partners. Our findings showed that community engagement is not static but a dynamic, ongoing process. Community partners felt that involving them earlier and in all aspects of the research process would make for better science. Researchers were often torn between “checking the box” to meet community engagement requirements set by the funder of their research and engaging community partners in various stages of research to advance the scientific mission because of time pressure. There were strong themes around clearly defined community partner roles as well as mutual trust and transparency, as they were considered central to successful engagement of communities in research. Related, participants noted that conflict between the researchers and community partners is a familiar part of the community engaged research process. Two common sources of tension were misaligned research priorities between researchers and community partners and lack of communication about study results. Lastly, there was little agreement between researchers about how to measure community engaged research impact outcomes or which impact outcomes matter the most. Our findings support the need for training and communication tools for both community and researcher partners.

Introduction

Community engagement is defined as the process of meaningfully involving communities affected by a research finding in the research process [ 1 ]. Community engagement in research is recognized as a key process to improve the way the research is prioritized, translated, and used in a real-life setting, and can reduce health disparities [ 2 , 3 , 4 , 5 ]. Community engagement can occur across all stages of research including identifying study topics, planning and designing the study, strengthening recruitment strategies, collecting and analyzing data, and interpreting and disseminating findings. Several United States federal health agencies including the National Institutes of Health and Patient-Centered Outcomes Research Institute offer funding for community and other stakeholder engaged research, highlighting growing interest and support at the national level [ 6 ].

While evidence regarding the methods of community engagement is increasing, detailed information about the role and scope of community engagement or specific approaches to successful community engagement across the full spectrum of the research cycle is still limited [ 7 ]. Additionally, a systematic review of clinical trials that report patient engagement for the purposes of research revealed that an estimated less than 1% of clinical trials engage patients in the research process and that engagement of minorities occurred in only about a quarter of trials [ 8 ]. Growing interest in the participation and contributions of community involvement make it an opportune time to examine the key success strategies adopted by research teams and other lessons learned, and to consider the implications for future community engaged health research.

One of the goals of the National Institutes of Health Clinical and Translational Science Awards (CTSA) program is to promote knowledge translation by engaging patients and communities in the research process. The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research—Hopkins CTSA—hosted a forum to engage researchers and community partners in a dialogue to reflect on their past and current experiences in a variety of aspects of community engaged research . This paper reports the main themes identified from semi-structured group discussions among diverse forum participants in relation to their past and current experiences in planning, implementing, and evaluating community engaged research .

Participants and setting

Group discussions were chosen to identify norms of research teams in their conduct of community engaged research. The forum was publicized to researchers, research staff, and community partners within the greater Maryland-Washington region through email invites using existing lists and word of mouth. In order to ensure diversity in our forum participants, we also sent out personal, verbal, and email invitations to 100 researchers and community partners conducting community engaged research. The forum was also publicized during the public announcement section of meetings hosted by community advisory boards and local agencies. A total of 36 researchers and 14 community members participated in five concurrent group discussion sessions. Researcher participants consisted of research staff (e.g., research program coordinators, research assistants), post-doctoral fellows, and faculty investigators. Community participants included patient consultants and prior study subjects. About 86% of forum participants indicated that they were involved in a community or other stakeholder engaged research project at the time of the forum, and 59% had prior exposure to community engaged research.

A planning committee was formed to develop the goals, agenda and format of the forum. The planning committee included key faculty and staff from the Hopkins CTSA. Also included were members of the Johns Hopkins Community Research Advisory Council—a research review committee consisting of community residents, representatives of local community organizations, and community advocates. The planning committee met over a 3-month time period for a total of 12 meetings and developed forum goals and objectives as well as format, content, and discussion methods. The planning committee set the main goal of the forum to bring together investigators, patients, community members, and other stakeholders to share their experiences working together on research that addresses health and social issues that impact Greater Baltimore, Maryland. The 3-h forum began with opening by Director of Johns Hopkins Institute for Clinical and Translational Research, followed by the keynote presentation by a director of one of the health disparities research centers at the Johns Hopkins University. Participants were then asked to join one of five breakout groups to discuss the following topics: 1) identification and selection of community partners; 2) community partner roles and responsibilities; 3) approaches to promoting community engagement; 4) process and impact evaluation of engagement; and 5) scope of community engagement (see Table  1 for example questions). The forum planning committee grouped the participants into five breakout discussion groups based on their topical preferences, past experiences, and their expertise that were collected during registration. Following the breakout sessions, forum participants reconvened and representatives from each breakout group briefly summarized their discussion and presented the key themes of their respective breakout group discussion.

Four of the five breakout groups included both researchers and community members. The fifth group included community members only in order to maximize comfort and sharing of relevant experiences by community members. Each breakout group included 7–11 members and had a moderator to facilitate the discussion (except for the community member-only group which had two co-moderators—one community leader and one researcher), a note taker to transcribe key discussion points for the facilitation of post breakout discussion report out, and two recording devices to record discussion content. Moderators were all well-established researchers with prior and/or current community engaged projects. They had experiences in working with community members and had prior experiences in moderating group discussions. The moderators had specific instructions with a semi-structured discussion guide to follow in order to maximize the exchange of information and facilitate productive discussion. The note takers were all doctoral students who had previous experiences in qualitative research. They were all briefed and trained on the forum purpose and methods. The duration of each group discussion was 1 h. Forum participants provided written permission to audio record the discussion and transcribe notes. The Johns Hopkins Institutional Review Board considered this a quality improvement project and waived it from a full review.

Each group discussion was audio recorded and transcribed verbatim by the original note takers. Following transcription, qualitative content analysis was performed by identifying common themes across group discussions. A standard theme-based content analysis approach was used to analyze the discussion results [ 9 ]. Relevant phrases and statements from each group discussion were identified. Phrases and concepts expressed by more than one participant were considered validated and were included in the analysis, with all of the validated phrases and concepts sorted into thematic groups according to similarity. The transcriptions were then read multiple times, key phrases that provided specific information relevant to the research questions were highlighted, and key themes were identified and supported by direct quotes.

We identified four themes and eight subthemes from the forum. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community engagement outcomes is an evolving area. Each theme with accompanying subthemes are detailed in the following section.

Community engagement is an ongoing and iterative process

Forum participants indicated that the amount of time community partners were engaged and the process of engaging community partners were different at various stages of research. The perceived importance and desire to be involved in the designing and planning stage was discussed more frequently than the desire to be involved in the other stages. Engaging in early phases of research was important to identify a problem and formulate the appropriate research questions. We identified three subthemes in relation to community engagement process: Engaging community in various stages of research, mission-driven vs. checking the box, and breadth and depth of engagement.

Engaging community partners in various stages of research

“We should be engaged in all stages of the research process” was a universal and oft-repeated sentiment within the Community partner group. Community partners felt researchers should be cognizant that community engagement is an iterative process, and that researchers’ ability to include community members and other stakeholders in all aspects of the research process is the key to success. In particular, community partners expressed that involving them earlier in the research process would make for better science:

“I think the framework is critical. The way that the research question is framed is critical. And I think that the community and the specific community, should be involved in developing the research question. Not too many folks would find fault with efforts to improve that disease or whatever may be, but if it’s not framed so that it applies … ” (Participant 6; Member of community research advisory council)

Researchers discussed actively engaging community partners in research through a series of ongoing, interactive process. Having open community forums (i.e., local forums of residents and community groups to identify issues faced by particular communities and neighborhoods and work together to address those issues) was one method to get community partners on same page, understand the needs of the community, and develop trust and rapport with the community. One researcher noted:

“I will say that the iterative process can actually be big advantage … I think that’s an incentive at least for most of the individuals that I have worked with that they really appreciate how their ideas have taken shape and how their input has been utilized. I think that can make things take a little bit more time but ultimately it is beneficial.” (Participant 1; Research investigator)

Mission-driven versus checking the box

Engaging community partners in all stages of research, however, was challenging at times. Participants discussed the importance of community engagement to advance the scientific mission. Yet, researchers stated that some grant mechanism requirements seem to have a list of community engagement requirements throughout the research study that may not always be productive to the project nor respectful of community partner time. Researchers noted that they do not want to waste community partners’ time unless there is a clear need for their feedback building on their skillset or life experiences. Valuing participant time was highlighted as one of the most difficult but important aspects of conducting research with community partners:

“I think the most challenging part of our current research is for the patients that I pushed so hard to get, for them to care about this really high level, you know, methodologic question … We don’t have monthly meetings … We try to call on them for mission driven things … We are very strategic about what we ask for [community partners] to provide input on … we don’t just waste their time just for the sake of checking a box.” (Participant 3; Research investigator)

Breadth and depth of engagement

Overall, community engagement was centered around identifying a research question or problem. Participants agreed that having communities identify research questions or problems is the most effective and pragmatic way of conducting community-based research. This process would ensure community buy-in when researchers decide to plan future studies in these same communities. One community member remarked on the good back and forth communication between community members and researchers present when she participated in a group of people living with high blood pressure that consulted researchers on relevant research questions:

“So that meant a lot to us for the fact, OK, you’re listening, and you’re actually developing something that’s going to, you know, cause I think what they did was they did something that was a consensus of what all of us had said. So we were really encouraged by it, and so when it comes time to actually do the study we want to be a part of the study, you know. ” (Participant 4; Patient).

Community partner roles must be well-defined and clearly communicated

Researchers expressed the need to consider the role of the community partners before beginning the research process—what is a community partner, the role of community partners, and the best ways to identify and recruit them. There were two subthemes directly addressing these questions: Roles of community partners and recruitment and selection of community partners.

Roles of community partners

Often, a bidirectional relationship with the community helped researchers determine the role of community partners. Participants noted that it is important to distinguish the role of community partners, as they are the liaisons that bring the researchers into the community while also acting as advisors, decision makers, and validators. Some participants called a community partner, the “mayor of the block,” the person that people in the community go to or someone who would be recognized by the community, and could “hold their own” in discussions about the community. This person would assist in translating what is going on in the community and monitor checks and balances.

The researchers in this discussion underscored the importance of clear communication about each community partner’s role to assure use of common language and clarity of roles in order to optimize the partnership and research. A research staff member talked about the importance of clarity in communication about the community partner roles by stating:

“We can be clear … I feel sometimes that there is a sense of, um people because they [community partners] don’t know what’s expected of them, feeling like they are not doing what they are supposed to be doing or that they’re we’re not...so we want to avoid that.” (Participant 9; Research staff).

Recruitment and selection of community partners

Community participants discussed the various ways they first became involved in research and collaborated with research teams. A common theme was engagement in research as a form of advocacy for a medical condition of interest. A community partner, the parent of a child with autism, shared her experience:

“I knew about clinicaltrials.gov , discovered a trial, participated in that trial and then subsequently asked to share my PHI [protected health information] for further research purposes and that was sort of the first time that I felt like I was asked by the research community to share information about my son’s autism and how it affects our family and so forth.” (Participant 11; Parent of a patient).

From the researcher perspective, it was important to first identify the type of community partner that the study requires and then to discuss who is the individual community member. Funding announcements, dissemination and implementation strategies, and knowing the skill sets of the individual community members were useful for selecting community partners. Nevertheless, difficulty identifying the right people to serve as community partners was a common challenge identified by researchers. Participants acknowledged the importance of relying on community resources and various stakeholders to identify and recruit community partners. For example, working with spiritual leaders and health departments, as well as getting to know and building trust with a community helped to identify community partners. To this end, participants noted that it would be ideal to the research team to establish presence and courtship to the community of interest and establish a relationship. Being active, involved, and partnering with community-based organizations would increase exposure and, in turn, enhance community partner engagement.

“ Having a conversation early on about what are your networks and really documenting that and understanding the kinds of networks that everyone brings to the table and how you can connect with those kinds of individuals or groups so that you can have those relationships built in advance so that when you get to the end of the process you can talk about your findings, you are not scrambling. You’ve established that.” (Participant 13; Research staff).

Mutual trust and transparency are central to community engagement

Participants noted that central to conducting community engaged research is the need to develop trust and value the unique contributions of the community partners who are invested in the project. The need to develop trust between researchers and community partners was a universal priority for forum participants. Subthemes to discuss trust to promote community engagement were: building trust, clear communication for transparency, and conflict in community engaged research.

Building trust

Participants stressed the importance of building trust long-term with the community and not coming to the partnership without consideration of community partners’ agendas. Building trust among community members and other stakeholders was also noted as an important aspect of conducting ethical and effective health research:

“That does make a huge difference … when the community sees somebody there, not with their hands out but actually wanting to be there month in and month out so when you do come calling or knocking or you need support, you have the stakeholders that relationship built that you can go to the head, the leadership of the community and they know you and they trust you.” (Participant 8; Member of community advisory council).

Clear communication for transparency

Participants underscored that researchers must make the research process as transparent as possible to community members. This included clear, honest and transparent communication with community members about funding, study findings, study team commitment to the community, duration of the study, and the overall goals of the study. Some community members felt, however, there was a lack of information from researchers to participants regarding results of the study.

“They very often don’t even let you know what, why they collected it, and how it impacted the analysis and then what they’re going to do with it. We never hear that part …” (Participant 5; Patient and member of community research advisory council).

Conflict in community engaged research

Researchers acknowledged that conflict between the researchers and community partners is a familiar part of the community engaged research process. Two sources of tension discussed by community partners were misaligned research priorities between researchers and community partners and lack of communication about study results. Researchers and community partners noted, however, that conflict was not always reported. When it was reported, it was not always clear how to manage conflict:

“I’ve been thinking a lot about [conflict] in many different [ways], but … as with muscles and anything, it is essential for growth and you need pain and destruction to move on. That’s how you know how you exercise well. When your muscles are torn and they need to regrow and repair. Otherwise you haven’t worked out enough... It’s the same for group engagement ... So how to manage [conflict] I don’t know but … that’s key.” (Participant 17; Research investigator).

Measuring community engagement impact outcomes is an evolving area

Researchers discussed a variety of community engagement outcomes they believed should be measured, such as participant attendance at meetings or activities, community partner needs, conflicts and conflict resolution, the amount of money and funding raised by community partners, and community partner self-efficacy. The researchers acknowledged it is easier to measure and evaluate short-term community engaged research outcomes like impact on study design rather than impact on health or impact of community engaged research on a community. However, they noted the lack of a commonly accepted impact measurement framework to guide the measurement of community engaged research for its impact. There was little agreement between researchers about how to measure community engaged research impact outcomes or which impact outcomes matter the most. Community engaged research might lack a commonly accepted impact measurement framework because it is an emerging field or as a result of differing goals of engagement that guide the evaluation of impact outcomes between projects. In the discussion about impact measurement, a researcher stated:

“What if we did this on the principle of justice? How would you measure justice? We get back to what you said about the goals. The goal is to incorporate justice, and that’s really why we are doing it. Can you measure something like that or do you want to be democratic. Or how would you measure whether your process was democratic and just or to some extent inclusiveness? It’s very hard to measure these types of things.” (Participant 20; Research investigator).

Researchers and policy-makers alike increasingly recognize the importance of seeking diverse and inclusive perspectives in translational research. Nonetheless, limited information is available about the role and scope of community engagement or specific approaches to community engagement across the full spectrum of the research cycle [ 7 ]. In particular, this paper offers the diverse perspectives of research investigators, staff, and community partners actively involved in community engaged research. This forum discussion allowed these diverse forum participants an opportunity to share their experiences and perspectives about the benefits and challenges of community engaged research. Our participants noted that community engagement is an ongoing and iterative process to which mutual trust and transparency are central and that the roles of community partners must be well-defined and clearly communicated for the engagement to be successful. These main themes are overall consistent with the key principles of engagement (i.e., reciprocal relationships, partnerships, co-learning, and transparency-honesty-trust) as highlighted in the recent literature [ 7 , 10 , 11 , 12 ].

Whereas all forum participants recognized the benefits of community engaged research, some of the subthemes such as engaging community in various stages of research suggest the need for closer dialogue between researchers and community partners in earlier phases of research. It was interesting to note that researchers felt engagement should happen less, once the research started; it was important for them to not waste community partners’ time by focusing on “mission driven things.” We did not find a similar concern about time burden among community partners. An essential element of community engaged research is the meaningful participation of a broadly representative group of stakeholders whose contributions are sought through all phases of the research, beginning with the planning and research question [ 12 , 13 , 14 ]. Indeed, the researcher participants in the forum noted that the most effective community engaged research involved community partners to identify a problem and formulate the appropriate research questions. Some of the data driven approaches such as the discrete choice experiment—a quantitative technique to uncover how individuals value selected attributes of a program by asking them to state their choice over different hypothetical alternatives [ 15 ]—may be useful to elicit community preferences as a way of enhancing their engagement in the early phase of research. For example, a recent systematic review [ 16 ] revealed that the discrete choice experiment, when applied to designing and characterizing therapies in the planning phase of research, resulted in increased acceptability and appropriateness.

Engagement in “all stages of the research process” came through as a strong theme within the Community partner group. Community partners in the forum appreciated the “back and forth” interaction between researchers and community members. A mixed methods study [ 17 ] showed that researchers do not routinely give feedback to community partners. Yet, community partners who receive feedback are motivated for further engagement as they feel it supports their learning and development while prompting researchers to reflect on the impact of community partners [ 17 ]. One of the ways in which researchers can provide such feedback would be to bring study findings back to the community—a lacking area in the research process, as noted by the community members. A survey of 109 community partners involved in health research with academic institutions [ 18 ] reported “research results disseminated to the community” as one of the top indicators of successful community engagement. Taken together, these findings suggest the need for culturally relevant and appropriate strategies to promote mutual feedback and better integration of community partners in the research process.

Many of the challenges discussed by the forum participants in the subthemes of mission-driven vs. checking the box, breadth and depth of engagement, and conflict in community engaged research occurred because priorities, motivations, and ways of working differed between researchers and community partners, which caused conflict and power struggles. Some of the practical issues associated with these subthemes (e.g., difficulty recruiting a set of experienced partners well connected to the target community or patient group, long-term commitment needed from partners, and time and cost limits imposed on studies) were recognized in a focus group study [ 19 ] in which problems connecting with the right person at the right time, individual member reluctance, and lack of skills and training were identified as main barriers to stakeholder engagement.

As suggested by our participants, clear and transparent communication is central to resolving potential conflicts in community engaged research. In particular, transparency in communication between community partners and researchers in terms of budget and research administrative processes [ 20 ] has been noted as key factors for improved community engaged research partnerships. Additionally, shared training opportunities for community partners and researchers may be helpful to build community partner skills about research and facilitate engagement on both sides [ 19 ]. The subtheme of recruitment and selection of community partners underscores the importance and need for the development of community capacity to facilitate more meaningful engagement in research. At the policy level, community engaged research needs to build in appropriate time, and funders should acknowledge this need as part of providing an appropriate context and budget for community engagement, to create the conditions where engagement has the potential to have a positive impact.

Forum participants considered a variety of impact assessments for their research and overall reported positive impact of community engagement on research, ensuring its appropriateness and relevance. They noted that it was difficult to have a common impact measure because of differing goals of engagement between projects. Indeed, a recent review of 68 studies addressing measures of community engagement reported that most studies used narrative descriptions of impact data [ 21 ]. Similarly, a mixed-methods study in which documents of 200 primary care research projects were examined and 191 researchers were surveyed noted qualitative reporting of community engaged research impact for study processes (e.g., designing methods or developing participant information) or on individual principal investigators (e.g., developing the grant application, managing the research, conducting the research, or the reputation of the principal investigator’s institution) [ 22 ]. A qualitative investigation [ 23 ] in the United Kingdom also revealed diverse views among stakeholders on what to measure and how to measure their impact. Taken together, the evidence base as to what constitutes adequate impact measures of community engaged research seems evolving. The findings suggest further substantive methodological development in terms of the way in which the impact of community engaged research is measured and reported, a clearer conceptualization of the nature of “impact,” and qualitative and quantitative methods for assessment of impact [ 23 ].

There are a number of study limitations to discuss. First, this was a convenience sample that was created for the purpose of the forum. In particular, we targeted researchers and community members who were already supportive of the idea of community involvement in research. Therefore, generalizability of the findings is limited. Additionally, we did not collect detailed sociodemographic information about the forum participants. The interpretation of the qualitative data might have looked different had we had this information such as age, working status (working/retired), or other relevant characteristics (roles, past experiences, etc.). Finally, it is possible that some of the moderators and notetakers of the concurrent discussion groups may not have been independent of the participants in his/her group and might have influenced the discussion either positively or negatively. We attempted to minimize the potential bias and impact of moderators and notetakers on the nature and direction of the discussion in each group by training them prior to the forum and offering them with an interview guide.

Successful implementation of healthcare interventions relies on community engagement at every stage, ranging from assessing and improving the acceptability of innovations to the sustainability of implemented interventions. In order to optimize the implementation of healthcare interventions, researchers, administrators, and policymakers must weigh the benefits and costs of complex multidimensional arrays of healthcare policies, strategies, and treatments [ 24 ]. This cannot be accomplished without meaningful engagement of key community partners throughout the research process. Challenges identified by the study teams underscore the need for enhanced community engagement training, joint planning of engagement activities, agreeing upon community partner roles and expectations in the early-planning stages of the proposed study, and increased opportunities for community participation in the research process.

Availability of data and materials

The data (anonymized transcripts from the group interviews used for the purpose of this analysis) that support the findings of this study are available from the corresponding author upon reasonable request.

Abbreviations

Clinical and Translational Science Awards

Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50. https://doi.org/10.1111/j.1369-7625.2012.00795.x .

Article   PubMed   Google Scholar  

Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31(1):13–21. https://doi.org/10.1007/s11606-015-3450-z .

Wennerstrom A, Springgate BF, Jones F, Meyers D, Henderson N, Brown A, Niyogi A, Martin D, Smith, III J, Kirkland AL, Jones L, Norris KC. Lessons on patient and stakeholder engagement strategies for pipeline to proposal awards. Ethn Dis. 2018;28(Suppl 2):303–10. https://doi.org/10.18865/ed.28.S2.303 .

Article   PubMed   PubMed Central   Google Scholar  

Kwon SC, Tandon SD, Islam N, Riley L, Trinh-Shevrin C. Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice. Transl Behav Med. 2018;8(5):683–91. https://doi.org/10.1093/tbm/ibx026 .

Silberberg M, Martinez-Bianchi V. Community and stakeholder engagement. Prim Care. 2019;46(4):587–94. https://doi.org/10.1016/j.pop.2019.07.014 .

Patient Centered Outcomes Research Institute. FAQs for applicants. http://www.pcori.org/funding-opportunities/how-apply/faqs-applicants#RESEARCH%21WE%20FUND . Accessed 3 Dec 2020.

Manafo E, Petermann L, Mason-Lai P, Vandall-Walker V. Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research. Health Res Policy Syst. 2018;16(1):5. https://doi.org/10.1186/s12961-018-0282-4 .

Fergusson D, Monfaredi Z, Pussegoda K, Garritty C, Lyddiatt A, Shea B, Duffett L, Ghannad M, Montroy J, Murad MH, Pratt M, Rader T, Shorr R, Yazdi F. The prevalence of patient engagement in published trials: a systematic review. Res Involv Engagem. 2018;4(1):17. https://doi.org/10.1186/s40900-018-0099-x .

Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405. https://doi.org/10.1111/nhs.12048 .

Forsythe LP, Frank LB, Hemphill R, Tafari AT, Szydlowski V, Lauer M, Goertz C, Clauser S. Researchers, patients, and stakeholders evaluating comparative-effectiveness research: a mixed-methods study of the PCORI reviewer experience. Value Health. 2018;21(10):1161–7. https://doi.org/10.1016/j.jval.2018.03.018 .

Granados-Santiago M, Valenza MC, López-López L, Prados-Román E, Rodríguez-Torres J, Cabrera-Martos I. Shared decision-making and patient engagement program during acute exacerbation of COPD hospitalization: a randomized control trial. Patient Educ Couns. 2020;103(4):702–8. https://doi.org/10.1016/j.pec.2019.12.004 .

Sheridan S, Schrandt S, Forsythe L, Hilliard TS. Paez KA; advisory panel on patient engagement (2013 inaugural panel). The PCORI engagement rubric: promising practices for partnering in research. Ann Fam Med. 2017;15(2):165–70. https://doi.org/10.1370/afm.2042 .

Haynes SC, Rudov L, Nauman E, Hendryx L, Angove RSM, Carton T. Engaging Stakeholders to Develop a Patient-centered Research Agenda: Lessons Learned From the Research Action for Health Network (REACHnet). Med Care. 2018;56(Suppl 10):S27–32.

Article   Google Scholar  

Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, Lau J. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med. 2014;29(12):1692–701. https://doi.org/10.1007/s11606-014-2878-x .

Ryan M. Discrete choice experiments in health care. BMJ. 2004;328(7436):360–1. https://doi.org/10.1136/bmj.328.7436.360 .

Salloum RG, Shenkman EA, Louviere JJ, Chambers DA. Application of discrete choice experiments to enhance stakeholder engagement as a strategy for advancing implementation: a systematic review. Implement Sci. 2017;12(1):140. https://doi.org/10.1186/s13012-017-0675-8 .

Mathie E, Wythe H, Munday D, Millac P, Rhodes G, Roberts N, Smeeton N, Poland F, Jones J. Reciprocal relationships and the importance of feedback in patient and public involvement: a mixed methods study. Health Expect. 2018;21(5):899–908. https://doi.org/10.1111/hex.12684 .

Skinner JS, Williams NA, Richmond A, Brown J, Strelnick AH, Calhoun K, de Loney EH, Allen S, Pirie A, Wilkins CH. Community experiences and perceptions of clinical and translational research and researchers. Prog Community Health Partnersh. 2018;12(3):263–71. https://doi.org/10.1353/cpr.2018.0050 .

Harrison JD, Anderson WG, Fagan M, Robinson E, Schnipper J, Symczak G, Hanson C, Carnie MB, Banta J, Chen S, Duong J, Wong C, Auerbach AD. Patient and family advisory councils (PFACs): identifying challenges and solutions to support engagement in research. Patient. 2018;11(4):413–23. https://doi.org/10.1007/s40271-018-0298-4 .

Carter-Edwards L, Grewe ME, Fair AM, Jenkins C, Ray NJ, Bilheimer A, et al. Recognizing cross-institutional fiscal and administrative barriers and facilitators to conducting community-engaged clinical and translational research. Acad Med. 2020. https://doi.org/10.1097/ACM.0000000000003893 .

Bowen DJ, Hyams T, Goodman M, West KM, Harris-Wai J, Yu JH. Systematic review of quantitative measures of stakeholder engagement. Clin Transl Sci. 2017;10(5):314–36. https://doi.org/10.1111/cts.12474 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Blackburn S, McLachlan S, Jowett S, Kinghorn P, Gill P, Higginbottom A, Rhodes C, Stevenson F, Jinks C. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study. Res Involv Engagem. 2018;4(1):16. https://doi.org/10.1186/s40900-018-0100-8 .

Crocker JC, Boylan AM, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519–28. https://doi.org/10.1111/hex.12479 .

Norris JM, White DE, Nowell L, Mrklas K, Stelfox HT. How do stakeholders from multiple hierarchical levels of a large provincial health system define engagement? A qualitative study. Implement Sci. 2017;12(1):98. https://doi.org/10.1186/s13012-017-0625-5 .

Download references

Acknowledgements

Not applicable.

The study was supported, in part, by grants from the National Center for Advancing Translational Sciences (UL1TR003098 and U54AI108332). Additional funding was received from the National Institute of Nursing Research (P30NR018093) and National Institute on Aging (R01AG062649). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Author information

Authors and affiliations.

The Johns Hopkins University School of Nursing, Baltimore, MD, USA

Hae-Ra Han, Ashley Xu, Kyra J. W. Mendez, Mona Bahouth & Cheryl Dennison-Himmelfarb

The Johns Hopkins Institute for Clinical and Translational Research, Community Engagement Program, Baltimore, MD, USA

Hae-Ra Han, Melanie Reese, Lee Bone & Cheryl Dennison-Himmelfarb

The Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA

Hae-Ra Han, Safiyyah Okoye & Lee Bone

Government Accountability Office, Washington, DC, USA

Joycelyn Cudjoe

The Johns Hopkins University School of Medicine, Baltimore, MD, USA

Mona Bahouth

Older Women Embracing Life, Baltimore, MD, USA

Melanie Reese

You can also search for this author in PubMed   Google Scholar

Contributions

HRH conceived of the study. All authors contributed to data acquisition. HRH, AX, KJWM, SO, JC, and MB analyzed and interpreted the qualitative data regarding the community engaged research experiences and preferences. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Hae-Ra Han .

Ethics declarations

Ethics approval and consent to participate.

The Johns Hopkins Institutional Review Board considered this a quality improvement project and waived it from a full review.

Consent for publication

Competing interests.

The authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Han, HR., Xu, A., Mendez, K.J.W. et al. Exploring community engaged research experiences and preferences: a multi-level qualitative investigation. Res Involv Engagem 7 , 19 (2021). https://doi.org/10.1186/s40900-021-00261-6

Download citation

Received : 15 December 2020

Accepted : 09 March 2021

Published : 30 March 2021

DOI : https://doi.org/10.1186/s40900-021-00261-6

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Community engaged research
• Qualitative
• Group interviews

Research Involvement and Engagement

ISSN: 2056-7529

• General enquiries: [email protected]

Participatory Research: Case Study of a Community Event

• First Online: 11 June 2016

Cite this chapter

• Rebecca Finkel 3 &
• Kate Sang 3  

Part of the book series: Leisure Studies in a Global Era ((LSGE))

1463 Accesses

This chapter sets out the main methodological approaches for participatory research in an events context, including various methods which can be employed. Participatory research often involves multiple instruments and techniques and is often utilised in conjunction with mixed methods, such as interviews, focus groups, and/or surveys. One of the key elements of participatory research is the equitable partnership approaches to planning and conducting the research in conjunction with community members and/or community-based organisations (Bergold, Participatory strategies in community psychology research: A short survey. In A. Bokszczanin (Ed.), Poland welcomes community psychology: Proceedings from the 6th European Conference on Community Psychology (pp. 57–66). Opole: Opole University Press, 2007). Participatory research views research participants as experts in the field of study and, as such, involves them in the knowledge-production process; thus, research projects are co-designed from inception through to completion (Gyi, Sang, & Haslam, Ergonomics , 56 (1), 45–58, 2013). This can be applied to events studies by examining the culture of the event through observation, participation, stakeholder meetings, collective reflection and analysis, and other sensory and visual techniques. The ‘group’ and ‘culture’ being examined are the events audiences and environments. Although events are temporary in nature, anthropological and sociological frameworks can still apply. This has been successfully done in a few events studies through the years (see Finkel, Unicycling at Land’s End: Case study of the Lafrowda Festival of St Just, Cornwall. In J. Ali-Knight & D. Chambers (Eds.), Case studies in festival and event marketing and cultural tourism . Leisure Studies Association Journal , 2 (92), 129–145, 2006; Goldblatt, Events and management. In R. Finkel, D. McGillivray, G. McPherson, & P. Robinson (Eds.), Research themes for events (pp. 78–89). Oxford: CABI, 2013) and can be considered a viable and useful methodological approach for events researchers and students to employ for impactful and relevant research. A case study is set out based on participatory research conducted at a community event located near Edinburgh, Scotland. The research is based on stakeholder meetings, survey questionnaires, collection of visual data including photos and videos of the event environment and visitors’ experiences, and the researchers’ personal observations and interactions. This can be considered an apt and accessible example for demonstrating this kind of methodology, as community events highlight the societal, economic, and cultural dimensions and discourses of events studies. It also democratises the research process; research is conducted with participants, rather than on a community.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

• Available as PDF
• Read on any device
• Instant download
• Own it forever
• Available as EPUB and PDF
• Durable hardcover edition
• Dispatched in 3 to 5 business days
• Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

Community Engagement: What Is It?

Qualitative Data and Approaches to Population–Environment Inquiry

Participatory Design as the Temporal Flow of Coalescing Participatory Lines

Banks, S., Armstrong, A., Carter, K., Graham, H., Hayward, P., Henry, A., et al. (2013). Everyday ethics in community-based participatory research. Contemporary Social Science: Journal of the Academy of Social Sciences , 8 (3), 263–277.

Article   Google Scholar  

Bell, J. (2010). Doing your research project . Milton Keynes: Open University Press.

Google Scholar  

Bergold, J. (2007). Participatory strategies in community psychology research: A short survey. In A. Bokszczanin (Ed.), Poland welcomes community psychology: Proceedings from the 6th European Conference on Community Psychology (pp. 57–66). Opole: Opole University Press.

Bergold, J. & Thomas, S. (2012). Participatory research methods: A methodological approach in motion. Forum: Social Qualitative Research , 13 (1), 30–42 http://www.qualitative-research.net/index.php/fqs/article/view/1801/3334 .

Bryman, A. (2001). Social research methods . Oxford: Oxford University Press.

Cornwall, A. & Jewkes, R. (1995). What is participatory research? Social Science & Medicine , 41 (12), 1667–1676.

Ellis, C. (2003). Participatory environmental research in tourism: A global view. Tourism Recreation Research , 28 (3), 45–55.

Evans, C. & Jones, R. (2004). Engagement and empowerment, research and relevance: Comments on user-controlled research. Research Policy and Planning , 22 (2), 5–13.

Finkel, R. (2006). Unicycling at Land’s End: Case study of the Lafrowda Festival of St Just, Cornwall. In J. Ali-Knight & D. Chambers (Eds.), Case studies in festival and event marketing and cultural tourism . Leisure Studies Association Journal , 2 (92), 129–145.

Finkel, R. & Finkel, M. (2014). The ‘dirty downside’ of global sporting events: Focus on human trafficking for sexual exploitation. Public Health . doi: 10.1016/j.puhe.2014.11.006 .

Finn, J. (1994). The promise of participatory research. Journal of Progressive Human Services , 5 (2), 25–42.

Goldblatt, J. (2013). Events and management. In R. Finkel, D. McGillivray, G. McPherson, & P. Robinson (Eds.), Research themes for events (pp. 78–89). Oxford: CABI.

Chapter   Google Scholar  

Guevara, J. (1996) Learning through participatory action research for community ecotourism planning. Convergence, 29 (3), 24–40.

Gyi, D., Sang, K., & Haslam, C. (2013). Participatory ergonomics: Co-developing interventions to reduce the risk of musculoskeletal symptoms in business drivers. Ergonomics , 56 (1), 45–58.

Haseman, B. (2006) A Manifesto for performative research . Media International Australia , Incorporating Culture & Policy , (118), 98–106.

IIED (1998). Participation, literacy and empowerment. PLA Notes 32 . London: International Institute for Environment and Development.

Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health , 19 , 173–202.

Krishnaswamy, A. (2004). Participatory research: Strategies and tools. National Network of Forest Practitioners , 22 , 17–22.

Maguire, P. (1987). Doing participatory research: Feminist approach . Amherst: University of Massachusetts Press.

Olshansky, E., Sacco, D., Braxter, B., Dodge, P., Hughes, E., Ondeck, M., et al. (2005). Participatory action research to understand and reduce health disparities. Nursing Outlook , 53 , 121–126.

Pain, R. (2004). Social geography: Participatory research. Progress in Human Geography , 28 (5), 652–663.

Reason, P. (1994). Participation in human inquiry . Thousand Oaks, CA: Sage Publications.

Sadd, D. & Jones, I. (2009). Long-term legacy implications for Olympic Games. In R. Raj & J. Musgrave (Eds.), Event management and sustainability (pp. 90–98). Oxford: CABI.

Simmons, D. (1994). Community participation in tourism planning. Tourism Management , 15 (2), 98–108.

van der Riet, M. & Boettiger, M. (2009). Shifting research dynamics: Addressing power and maximising participation through participatory research techniques in participatory research. South African Journal of Psychology , 39 (1), 1–18.

Wearing, S. & McDonald, M. (2002). The development of community-based tourism: Re-thinking the relationship between tour operators and development agents as intermediaries in rural and isolated area communities. Journal of Sustainable Tourism , 10 (3), 191–206.

Download references

Author information

Authors and affiliations.

Rebecca Finkel & Kate Sang

You can also search for this author in PubMed   Google Scholar

Editor information

Editors and affiliations.

School of Events, Tourism and Hospitality, Leeds Beckett University, Leeds, United Kingdom

Ian R Lamond

Hollings Faculty, Manchester Metropolitan University, Manchester, United Kingdom

Louise Platt

Copyright information

© 2016 The Author(s)

About this chapter

Finkel, R., Sang, K. (2016). Participatory Research: Case Study of a Community Event. In: R Lamond, I., Platt, L. (eds) Critical Event Studies. Leisure Studies in a Global Era. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-137-52386-0_10

Download citation

DOI : https://doi.org/10.1057/978-1-137-52386-0_10

Published : 11 June 2016

Publisher Name : Palgrave Macmillan, London

Print ISBN : 978-1-137-52384-6

Online ISBN : 978-1-137-52386-0

eBook Packages : Social Sciences Social Sciences (R0)

Share this chapter

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Publish with us

Policies and ethics

• Find a journal
• Track your research

Promoting justice through community-based research: International case studies

Affiliations.

• 1 University of Illinois Chicago, Chicago, Illinois, USA.
• 2 University of Seville, Seville, Spain.
• 3 Pontificia Universidad Catolica del Peru, Lima, Peru.
• 4 Federico II University, Naples, Italy.
• PMID: 35285953
• DOI: 10.1002/ajcp.12584

Community-based participatory research (CBPR) approaches to promoting justice focus on working from the ground up and giving a voice to marginalized communities regarding their concerns, potential solutions, and how to address social justice issues that matter to them. The pursuit of justice is often related to efforts to attain personal as well as collective well-being. In this paper, we illustrate three exemplars of community psychologists' efforts to promote justice. Within each case study, we discuss the social and community context and examine how the researchers built partnerships and solidarity, developed ways of doing, and approached challenges and solutions. First, we present an example to promote economic justice through an entrepreneurship initiative developed in collaboration with young Black youth with disabilities in the United States. The second case illustrates an effort to promote reproductive justice in collaboration with Roma women and girls in Spain. The third exemplar depicts the use of life stories as a method to raise the voices of displaced, marginalized indigenous women in Peru. Based on these three case studies, we present a synthesis model of social justice. We also discuss implications for future studies emphasizing the importance of engaging community participants in research meaningful ways, developing sustainable partnerships, and decolonizing research.

Keywords: community-based participatory research; economic justice; reproductive justice; social justice.

© 2022 Society for Community Research and Action.

Publication types

• Research Support, Non-U.S. Gov't
• Community-Based Participatory Research / methods
• Social Justice*
• United States

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Front Public Health

Community Case Study Article Type: Criteria for Submission and Peer Review

Matthew lee smith.

1 Department of Health Promotion and Behavior, College of Public Health, The University of Georgia, Athens, GA, USA

2 Department of Health Promotion and Community Health Sciences, Texas A&M Health Science Center School of Public Health, College Station, TX, USA

Sue E. Levkoff

3 College of Social Work, University of South Carolina, Columbia, SC, USA

Marcia G. Ory

The importance of case studies in public health education and promotion.

Health programs and practices are often conceived and delivered by community-based practitioners to address specific community health education and promotion needs ( 1 ). Although, initially untested, such programs can provide important lessons for researchers and practitioners, alike. Given the growing emphasis on community-based participatory research (CBPR) approaches ( 2 ), it is especially important for researchers to build upon findings from CBPR studies, which can contribute to the development of evidence-based programs and practices for widespread dissemination ( 3 ).

While a community case study can take many forms ( 4 , 5 ), we are defining it as a description of, and reflection upon, a program or practice geared toward improving the health and functioning of a targeted population. We utilize the term “community” in contrast to “clinical” studies, but it is important to note that a community can be defined in terms of geographic boundaries as well as demographic characteristics, common settings, and/or affiliations.

Typically, a community case study documents a local experience about delivering services to meet an identified need. Community-based studies often rely on community engagement principles, which are not typically incorporated in the more traditional science-based approach to evidence-based program development (e.g., CBPR, action research, and community-engaged research). The community case study that documents early experiences can contribute to programmatic development as well as to the future development of evidence-based practice. This has been referred to as the “practice to science” approach to the development of evidence-based practices ( 6 ). The community case study can also represent activities at later development stages, for example, documenting the experience of implementing an evidence-based program or practice in a different context (e.g., different culture, different population, and different setting) from that in which it was first developed [“from science to practice” ( 6 )]. The lessons learned from such community case studies are essential for adaptation, replication, and eventual widespread dissemination and sustainability of innovations across a wide range of settings and populations.

Although case studies are a recognized form of research ( 5 ), the criteria for evaluating the quality of such efforts necessarily differs from empirical research articles where there is less attention to the local experience and context in which the intervention occurs, and more emphasis is given to the use of standardized research designs, measures, and analyses.

Key Components of a Community Case Study

Under this article type, Frontiers in Public Health Education and Promotion will accept a broad spectrum of manuscripts that describe interventions, including programs and services, which promote public health education, practice, research, and/or policy. Such public health interventions can be implemented at the behavioral, organizational, community, environmental, and/or policy level(s). Articles require a description of the nature of the problem being addressed and rationale for the proposed intervention, the context (setting and population) in which the intervention is being implemented, and sufficient detail to allow replication of key programmatic elements. Reflections about public health impact as well as what works and what does not work should be highlighted. Additionally, submissions will require a discussion section that shares practical implications, lessons learned for future applications, and acknowledgment of any conceptual or methodological constraints. Articles should not exceed 5,000 words and include a maximum of five tables/graphs. Evaluation criteria for this article type are outlined below:

We recommend that community case study article submissions address the following issues (if relevant).

• □ What is the problem? Whom does it affect?
• □ What are the gaps about what is known or done currently?
• □ What is the setting? Who are the key stakeholders? Who is the target population or participants?
• □ With whom did you work or collaborate? Are there any unique characteristics of the team who worked to implement the solution?
• □ What is the solution described by this community case study?
• □ Is this solution innovative/novel in terms of content, format, and/or delivery? If yes, why?
• □ What are the essential elements of the solution? Could this community case study be replicated? Include sufficient detail that the reader would know if replication would be feasible in his/her own context.
• □ What are the barriers and facilitators to the development, implementation, and/or dissemination of the intervention?
• □ What are the major successes of the solution? What are the promising results to date? Include data and/or evaluation results, if available.
• □ How does this improve public health education, practice, research, and/or policy? What are the broader implications of this work?
• □ Recommendations for those who want to replicate this in other settings, populations, or over time.

Criteria for Review (Template for Review Editors to Complete for Each Manuscript)

Indicate what the community case study describes (check all that apply)

• __an education effort
• __a health promotion program
• __a health promotion service
• __an environmental change taking place in the community
• __a technological change taking place in the community
• __a policy change taking place in the community
• __a community partnership
• __others. Please specify: _____________________
• __none of the above (i.e., inappropriately categorized for submission as a community case study article).

Indicate the target audience for the case study (check all that apply)

• __educators
• __community professionals
• __health-care professionals
• __lay public
• __policy makers
• __other. Please specify: _____________________

Mandatory Sections and Associated Criteria

A community case study article has the following mandatory sections: abstract, introduction, background and rationale, description of the case, methodological aspects (including targeted population and setting), discussion, and lessons learned/recommendations. Are all sections present?

• Is the abstract written in a clear and comprehensive way?
• Does the abstract reflect major conclusions articulated in the case study?

Introduction

• Does the introduction present the problem in an appropriate context?
• Other comments on introduction.

Background and Rationale

• Is the intent of the case study adequately described?
• Is a justification made for the innovation/novelty of proposed case in content, format, and/or delivery?
• Are the questions asked by the case study most essential to the success of the initiative?
• Other comments on background and rationale.

Essential Elements of the Intervention

• Is the intervention adequately described (e.g., development, previous findings if any, components, and format/design)?
• Is the intervention described in sufficient detail to understand the essential elements?
• Are the implementation procedures adequately described (e.g., how is the intervention being implemented in a particular setting, population, and/or partnerships; are any adaptations needed from prior work)?
• Are the target setting(s) and population(s) adequately described so that context for the case study is clearly understood?
• Is this a single community or multiple community study?
• Is there an overall conceptual model or framework for understanding the importance of the problem and selection of intervention elements?
• Is it clear whether the emphasis is on furthering knowledge about the process and/or outcome of the case study? If focus is on process, is there attention to key elements of implementation such as reach, reproducibility, scalability, or sustainability? If on outcomes, are the metrics of success (outcome indicators) clearly articulated?
• Is the generalizability of findings/lessons learned addressed?
• Other comments on methods.
• Are findings/lessons learned accurately reported from data presented?
• Is the level of detail of the results appropriate (too much, too little, or about right)?
• Is any essential information missing?
• Other comments on results.
• Are the reported findings/lessons learned summarized briefly and described within the context of what is currently known about the public health issue(s) or problem(s) being addressed?
• Does the article conclude with practical recommendations for others who might replicate this intervention/program (or similar interventions/programs)?
• Does the article conclude with applied recommendations for those in the field who might deliver this intervention/program (or similar interventions/programs) in their communities/settings?
• Does the case study contribute concrete recommendations for delivering and/or improving the intervention for future applications (directed toward educators, researchers, or practitioners, as appropriate)?
• Does the article address any conceptual or methodological limitations for future implementation, dissemination, and sustainability?
• Other comments on discussion.
• Are the conclusions justified?
• Overall, does the article contribute to building evidence-based practice and/or policy?
• Is prior work, if any, properly and fully cited?

Article Length

• A case study article should not exceed 5,000 words. Should any part of the article be shortened? If yes, please specify which part should be shortened.
• A case study article should not include more than five tables/figures. If there are more tables/figures included, please specify if you believe tables can be combined, condensed, or eliminated.

Language and Grammar

• Are the language and grammar correct?
• Should the paper be sent to an expert in English language and scientific writing?

Other Comments

• Please add any further comments you have regarding this manuscript.

Reviewer Ratings

• Significance of issue being addressed by the case study: scored out of a maximum of 10 points
• Description of essential elements of the case study: scored out of a maximum of 10 points
• Appropriateness of the context (population and setting) in addressing the public health issue/problem described in the case study: scored out of a maximum of 10 points
• Sufficient conceptual and methodological detail describing why and how the intervention was implemented: scored out of a maximum of 10 points
• Reflections on what worked and did not work in the design, implementation, and/or dissemination of the program: scored out of a maximum of 10 points
• Quality of the writing: scored out of a maximum of 10 points
• Quality of the figure(s) and table(s): scored out of a maximum of 10 points
• Significance of the findings/lessons learned: scored out of a maximum of 10 points

Author Contributions

All authors were integral in formulating and drafting the manuscript and associated criteria.

Conflict of Interest Statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

COMMUNITY CASE STUDY article

Frameworks for community impact - community case study.

• Northeastern Vermont Regional Hospital, St. Johnbury, VT, United States

The Affordable Care Act of 2008 placed specific community health needs assessment and community benefit reporting requirements on US not-for-profit hospitals. The requirements are straightforward, but come with no expectation for synergy between the needs assessment and the community benefit spending, no direction on how to design systems to improve community health, and with surprisingly little accountability for improving health outcomes. With the help of diverse community partners, one Critical Access hospital in rural Vermont has successfully linked the needs assessment with community benefit dollars to address upstream contributors of health. In 2014, Northeastern Vermont Regional Hospital lead the creation of NEK Prosper: Caledonia and Southern Essex Accountable Health Community with a mission to tackle poverty as the ultimate root cause of poor health in the region. This article outlines how a hospital community health needs assessment ignited a change in how community partners worked together, aligned organizational strategies, and overcame industry jargon barriers to create regional system change to improve health. And how that same hospital has used community benefit dollars to accelerate action at the community level.

Introduction

This article outlines how Northeastern Vermont Regional Hospital (NVRH) is able to use its community health needs assessment as both a catalyst to change how community partners work together, and to inform how best to spend the hospital community benefit dollars to impact community health.

NVRH is a 25 bed Critical Access Hospital in northern Vermont. The 2012 NVRH Community Health Needs Assessment (CHNA) identified poverty as one of the top health priority areas. Poverty, and the symptoms of poverty like inadequate access to healthcare, healthy food, transportation, and education, is a well-documented root cause of poor health ( 1 , 2 ). Low income adults are more likely to suffer difficulties in their daily lives due to chronic illness, while children living in poverty are often left with risk factors that can affect their health throughout their lives ( 3 ) Consequently, tackling poverty in the hospital service area became a priority issue for NVRH and its leaders, particularly the CEO. As part of the 2012 CHNA implementation plan, NVRH committed to convene community leaders to address the issue of poverty as the upstream, systemic driver of poor health and health inequity.

Convened by invitation of NVRH, the leaders of the regional Federally Qualified Health Center (FQHC) and home health agency, designated mental health agency, community action agency, council on aging, and designated regional housing organization began meeting regularly at the hospital. As they talked about what they each could do to address poverty and researched how they could work better together in a strategic and collaborative way, two models emerged: The Accountable Health Community (AHC) and collective impact (CI) models.

AHC is an emerging model gaining popularity across the US. An AHC is responsible for the health and well-being of everyone who lives in a geographic region. The AHC model recognizes that the health of a population is determined by multiple factors: healthcare, environment, socio-economic status, and individual behaviors. ( 4 ) The Center for Medicare and Medicaid Services (CMS) says the AHC model “addresses a critical gap between clinical care and community services in the current health care delivery system” ( 5 ).

The Prevention Institute has embraced the AHC model as a “promising vehicle toward reaching the full potential of the Triple Aim.” The Prevention Institute has identified nine core elements of the AHC model: multi-sectoral partnership; integrator organization; governance; data; strategy and implementation; community engagement; communications; and sustainable financing ( 6 ).

The AHC model outlines one structure to foster collaboration ( 7 ). True collaboration requires multi-sector partners work well-together ( 8 ). This is where the collective impact model can help.

CI has been articulated as a method for solving large scale social problems by “a systemic approach to social impact that focuses on the relationships between organizations and the progress toward shared objectives.” Successful CI initiatives have five conditions that together produce true alignment and lead to powerful results: a common agenda, shared measurement systems, mutually reinforcing activities, continuous communication, and backbone support organizations ( 9 ).

NVRH is located in Vermont's Northeast Kingdom, a region known for its rugged rural landscape and independent and spirited people. The primary service area for NVRH is Caledonia and southern Essex counties, with just under 30,000 people. Population density in Caledonia County is 48.1 persons per square mile and 9.5 persons per square mile in Essex County ( 10 ). Both counties are bordered by the Connecticut River and New Hampshire to the east.

The 25 bed hospital is the largest employer in the region, with over 600 employees. The hospital operates four rural health clinics and six specialty medical offices. A different entity operates three FQHC's and home health and hospice for the region. All the primary care offices in the region are recognized NCQA Patient Centered Medical Homes. Mental health services are provided by a regional designated mental health agency and many independent providers in private practice. There are several independent long-term care facilities in the area. Comprehensive cancer care services are located on the NVRH campus, but provided by the nearest (70 miles to the south) tertiary center. A private for-profit dialysis center provides services in a building owned by NVRH. Medically Assisted Treatment (MAT) for opioid addiction is provided by a private for-profit organization located down the road from NVRH. The mental health agency and several primary care offices operated by the hospital and the FQHC also provide MAT services.

NVRH has a long history and reputation for working collaboratively and embracing the idea that health happens outside the walls of the hospital. Over the decades, NVRH leadership has spearheaded the formation of prevention coalitions to address obesity and substance use, providing staff resources, meeting space, and funding for coalition initiatives. Both NVRH leadership and staff routinely works with local and state public health staff though the Vermont Department of Health on prevention and public health initiatives driven by the Vermont State Health Improvement Plan, and data like the Behavioral Risk Factor Surveillance Survey and the Youth Behavior Risk Survey collected by the Health Department, as well as local Department of Health priorities.

The NVRH service area was the first of two pilot communities funded by the Vermont Blueprint for Health in 2005, and the first Integrated Medical Home and Community Health Team pilot community created under Act 71 ( 11 ). The robust and active Blueprint for Health Community Health Team continues to provide a forum for coordinated care between direct service providers from healthcare, human services, and community-based organizations.

NEK Prosper!

In 2014, NVRH lead the creation of NEK Prosper: Caledonia and Southern Essex Accountable Health Community with a mission to tackle poverty as the ultimate root cause of poor health in the region.

That initial informal group of community leaders convened by NVRH in 2014 has since added the state-wide foodbank and the regional United Way and become the leadership team. NEK Prosper has provided the forum for the leadership team decision makers come together to strategically align their organizations, something that did not happen prior to the formation of the AHC.

The leadership team embraced the frameworks provided by the AHC and CI models. There is a formal governance and decision-making structure, shared measures for success, and intentional methods for community engagement. Basic meeting etiquette and equitable participation is ensured by reviewing standard norms of behavior, such as “listening with intent” and “address issues directly and succinctly” at each meeting. Leadership team members have adopted norms of behavior for meetings. They have all signed a memorandum of understanding (MOU) that outlines the mission and purpose of the AHC, specific roles and responsibilities of the leadership team members, and a process for decision-making. Stewardship has been an important guiding principle for all members; the advice to “wear two hats – those of your organization and this partnership” is included in the norms of behavior.

Today, the AHC includes members from healthcare, human services, housing, transportation, mental health, community action, charitable food, funders, school districts, domestic violence agency, youth services, economic development and regional planning, banks/financial organizations, town government, restorative justice, and State agencies including Vermont Department of Health and Vermont Department of Human Services ( Figure 1 ). All NEK Prosper members sign a culture statement that encourages innovative thinking, sharing of resources, and working relationships based on trust and respect. Rather than creating another needs assessment, NEK Prosper officially adopted the hospital community health needs assessment (CHNA) as the official community needs assessment of the AHC in 2016.

Figure 1 . Member Organizations for NEK Prosper.

The name NEK Prosper: Caledonia and Southern Essex Accountable Health Community was officially adopted in 2018. NVRH serves as the backbone organization for NEK Prosper.

Workgroups called Collaborative Action Networks (CANs) include community member participation and focus on each of NEK Prosper's five outcome areas: our community will be well–nourished, well-housed, physically healthy, mentally healthy, and financially secure. NEK Prosper and the CANs use Results Based Accountability™ to measure impact on health.

Programmatic Elements

The purpose of the NVRH community health needs assessment is to identify initiatives at the individual, community, environmental, and policy level, as well as programs and services that meet the hospital's mission to improve the health of people in the communities it serves. When it came time for NVRH to complete the 2018 CHNA, the leading criterion for setting community health priorities was the ability to work within the NEK Prosper framework to best capitalize on existing community resources and assets.

The 2018 CHNA built on the foundation of the previous assessments. New for 2018, the CHNA used the framework of NEK Prosper. Additionally, the CHNA was advised by the data compiled and the community engagement work already done by NEK Prosper, and adopted the mission of the NEK Prosper to reduce poverty in the region.

The CHNA data collection identified low-income families, and older adults as the most vulnerable population. The CHNA validated the objectives of NEK Prosper that communities will be financially secure, physically healthy, mentally healthy, well-nourished, and well-housed. Consequently, the NVRH 2018 CHNA proposed that over the next three years, NVRH will implement initiatives, and programs and services that work to meet these five objectives to improve health in the community, while intentionally addressing the underlying causes of health disparities .

Like NEK Prosper, the 2018 NVRH CHNA Implementation Plan and Evaluation use Results Based Accountability™ (RBA) to measure impact, evaluate initiatives, and drive action and change. RBA provides a step by step process to get results. RBA defines both population level (whether we have achieved goals for a defined population) and performance level (how well a program or service is working) measures. ( 12 ).

In fiscal year 2019, with an intentional effort to use community benefit dollars to accelerate action, the hospital budgeted $93,000 from operations to fund initiatives of the five CANs of NEK Prosper. The initiatives and dollar amounts are outlined in the CHNA Implementation Plan. For that first year, not all the CANs had initiatives ready for funding. The same amounts were budgeted for fiscal year 2020.

The CANs are data driven and use a common template and tools to decide which community strategies to implement. The Well-Nourished CAN launched the Food Hero Social Marketing Campaign in May 2019. Food Hero is a program from Oregon State University Extension Service with funding from SNAP-ED. The goal of the program is to increase fruit and vegetable consumption by creating and disseminating low cost, easy to prepare, and healthy recipes ( 13 ).

NVRH Community Benefit dollars purchased re-useable grocery bags with the Food Hero and NVRH logo. The bags are distributed at events sponsored by NVRH and the partner organizations of the Well-Nourished CAN. Large Food Hero banners attract attention at local events. Food Hero themed placemats are used at the hospital and senior meal sites.

Using Results Based Accountability™ (RBA) principles, the Well-Nourished CAN tracks the number of sites using Food Hero materials, social media engagements, and the number of Food Hero recipes distributed to measure performance level results. The CAN will use a Food Hero qualitative evaluation tool to measure behavior change in spring 2020. The CAN uses population level indicators collected by the Vermont Department of Health (fruit and vegetable consumption and the prevalence of hypertension) to measure long term impact.

Other CAN initiatives funded by NVRH community benefit dollars are the popular smoothie bikes for use at school and community events as part of the Physically Healthy CAN's community-based campaign to increase physical activity, and stipends for fitness providers to offer free pop up fitness classes in local parks. NVRH has funded a small pilot project that pays for complimentary therapies like acupuncture for people coping with mental health issues under the direction of the Mentally Healthy CAN. Every CAN initiative is evaluated for impact by using RBA performance measures of “how much, how well, and is anyone better off.” Each CAN measures community wide impact by using population level indicators such as percentage of people getting the recommended amount of physical activity or regional rates of suicide. Impact dashboard for some of the CANs can found at the NEK Prosper website.

The partners in NEK Prosper are not stopping with community-based interventions of the CANs. Two wellness funds were created thanks to the strong culture of stewardship, and leaders focused on action to improve health by tackling poverty.

Working with local economic development and financial partners NEK Prosper members are ready to launch the NEK Prosperity Fund using a capital stacking approach to raise funds to free up almost a million dollars currently held by the regional Community Development Financial Institution (CDFI) to invest in small and emerging local businesses. The purpose of the fund is to act as an investment vehicle aimed at promoting economic development by offering loans to local businesses, as well as supporting the overall well-being of the employees and customers of the business. Loans will be given to businesses that might not qualify for traditional bank loans or other loans offered by the CDFI. These more “at risk” businesses will need a high level of technical assistance to be successful. An Advisory Committee of NEK Prosper will assist the CDFI in developing general policies for mission driven funding.

The NEK Prosper leadership team has committed to raising $200,000 for a loan loss reserve fund to protect the original capital loan fund assets, and to pay for additional business support services by the experienced CDFI staff. It is expected the money will be raised quickly with investments from the hospital, other leadership team organizations, and local businesses.

In spring 2020, NEK Prosper launched the Healthy Cents Fund. The Healthy Cents Fund is available for local organizations for innovative upstream interventions or investments that will create healthy and thriving communities and positive social, economic, or environmental impact. The fund aims to accelerate the work of NEK Prosper and move the AHC closer to the five outcome areas. The value-based payment environment was key to the creation of this fund. Funding for the Healthy Cents Fund comes from Medicaid capitated payments to NVRH paid through the Vermont All Payer Model and the state-wide Accountable Care Organization. Rather than wait for potential shared savings, NVRH takes 1% off the top of the per member per month capitated payments to finance the Healthy Cents Fund, or about $58,000 annually.

Both funds require community engagement activities, and must tie directly to the five outcomes areas of NEK Prosper and the health priorities of the CHNA. Social return on investment is measured using a modified logic model table linking funded activities to short and long term social outcomes.

In a value-based payment environment, hospitals have the financial incentives to keep people well and out of the hospital and the flexibility to use hospital resources to address the social determinants of health. It is time for hospitals to put resources into prevention and the social and environmental factors that make people sick ( 1 ). Nationally, researchers and policy makers are looking for ways for hospitals and partners to combine resources in a more systemic way ( 14 , 15 ).

Hospitals already have a tool in place to identify the community needs and priorities: the CHNA. The data and community input gathered during the CHNA process provides the roadmap for where hospitals can best invest resources to make the most impact on health. The community benefit requirements of the Affordable Care Act make it possible for hospitals to get credit for their investments. Yet, few hospitals are investing in “community building” projects that address social determinants ( 2 ). Additionally, there is clear consensus that a comprehensive approach to improving health requires multisector partners working in sync. However, we are falling short of all we can do to truly improve health and well-being ( 8 ).

NVRH and the partner organizations in the region have used the promising models of collaboration of Accountable Health Community (AHC) and collective impact (CI) to align their strategies, organization resources, and funding. The models provide the structure to work collaboratively, while holding people accountable for their contributions to the goals of NEK Prosper. AHC and CI have helped create an atmosphere of trust and a process for measuring results.

Leadership from the hospital CEO and the executive directors of other community agencies was a critical component to initiating and continuing the collaboration. Stewardship and trust are two additional elements that are essential. The CI model provides a model for identifying and incorporating these elements into concrete activities.

The role of the hospital was critical to the success of NEK Prosper. Despite its small size, NVRH is a leading force in the community. Additionally, the financial contribution provided through the community benefit funds enabled concrete actions that the community might otherwise have struggled to achieve.

Lessons Learned and Tips for Success:

• Don't reinvent the wheel. Use existing models and frameworks to create a community collaborative structure the works in your community.

• Be strategic in making your list of who needs to be at the table. Include traditional health and human service partners, community-based organizations focused on social determinants, local and state government, funders, and less traditional partners like for-profit business and economic development agencies.

• Finding common ground with less traditional partners may take some time; expect communication barriers. NVRH and NEK Prosper found that banks and economic development agencies wanted the same thing – a healthy prosperous community; however, industry specific jargon made it difficult to identify common goals. Engage these partners in your work by asking for their expertise in finding financial resources for projects and measuring financial return on investment. In exchange, health and human services can offer expertise in social return on investment measures, and provide specific services and programs to improve the health and well-being for employees of these partners and for the employers and customers they work with every day.

We inherently know that we are better together, stronger together, and can accomplish more together. Using current partnership frameworks like Accountable Health Community and collective impact, hospitals can provide the data - CHNA, the funding - community benefits, and the leadership to foster a culture of stewardship to truly create and maintain healthy communities.

Conclusions

As hospitals work to improve health in their communities, they must be intentional about improving the systems and structures within their organizations and regions to support health, well-being, and equal opportunities for all.

The recipe for success includes a strong foundation built on three models: Accountable Health Community, Collective Impact, and Results Based Accountability™ to guide operations, keep community partners heading in the same strategic direction, and quantify and measure results. Adding three key ingredients: leadership, stewardship, and action to the foundational structure drives NEK Prosper toward high impact and a healthier, and potentially more prosperous, region.

Data Availability Statement

The datasets generated for this study are available on request to the corresponding author.

Author's Note

This is a community case study as described by one author. The author has a unique perspective because of her involvement in the initial and ongoing operations of NEK Prosper. She is also the staff person at NVRH in charge of both the CHNA process and the community benefit reporting.

Author Contributions

The author confirms being the sole contributor of this work and has approved it for publication.

Conflict of Interest

The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

1. Bush M. Addressing the root cause: rising health care costs and social determinants of health. N C Med J. (2018) 79:26–9. doi: 10.18043/ncm.79.1.26

PubMed Abstract | CrossRef Full Text | Google Scholar

2. Caffrey A, Pointer C, Steward D, Vohra S. The role of community health needs assessment in medicalizing poverty. J Law Med Ethics . (2018) 46:615–21. doi: 10.1177/1073110518804212

3. Chokshi DA. Income, poverty, and health inequality. JAMA. (2018) 319:1312–3. doi: 10.1001/jama.2018.2521

4. Nichols V. Accountable Communities for Health Factsheet. (2016). Available online at: https://www.preventioninstitute.org/publications/accountable-communities-health-factsheet (accessed February 16, 2020).

5. Accountable Health Communities Model:Assistance and Alignment Tracks Participant Selection. Center for Medicare and Medicaid Innovation. (2017).

6. Mikkelsen L, Haar W. Accountable Communities for Health: Opportunities and Recommendations . Oakland, CA: Prevention Institute (2015).

7. Mongeon M, Levi J, Heinrich J. Elements of Accountable Communities for Health: A Review of the Literature. Washington, DC: NAM Perspectives (2017).

Google Scholar

8. Siegel B, Erickson J, Milstein B, Pritchard KV. Multisector partnerships need further development to fulfill aspirations for transforming regional health and well-being. Health Affairs . (2018) 37:30–7. doi: 10.1377/hlthaff.2017.1118

9. Kania J, Kramer M. Collective Impact . Stanford social innovation review (2011) 36.

10. US Census Bureau Quick Facts . (2010). Available online at: www.census.gov/quickfacts/fact/table/US/PST045219 (accessed Febraury 16, 2020).

11. Ensuring Success In Health Care Reform , Sec/ 5. 18 V.S.A. 702. (2007).

12. Friedman M. Trying Hard Is Not Good Enough. Charleston, SC: PARSE Publishing (2015).

13. Tobey LN, Koenig HF, Brown NA, Manore MM. Reaching low-income mothers to improve family fruit and vegetable intake: food hero social marketing campaign—research steps, development and testing. Nutrients . (2016) 8:562. doi: 10.3390/nu8090562

14. Funders Forum on Accountable Health . Available online at: https://accountablehealth.gwu.edu/ (accessed February 16, 2020).

15. Georgia Health Policy Center . Available online at: https://ghpc.gsu.edu/project/bridging-for-health/ (accessed February 16, 2020).

Keywords: community benefit, accountable health community, community health needs assessment, non-profit hospital, social determinansts of health

Citation: Ruggles L (2020) Frameworks for Community Impact - Community Case Study. Front. Public Health 8:197. doi: 10.3389/fpubh.2020.00197

Received: 02 March 2020; Accepted: 30 April 2020; Published: 02 June 2020.

Reviewed by:

Copyright © 2020 Ruggles. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Laural Ruggles, l.ruggles@nvrh.org

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Case Study – Methods, Examples and Guide

Table of Contents

A case study is a research method that involves an in-depth examination and analysis of a particular phenomenon or case, such as an individual, organization, community, event, or situation.

It is a qualitative research approach that aims to provide a detailed and comprehensive understanding of the case being studied. Case studies typically involve multiple sources of data, including interviews, observations, documents, and artifacts, which are analyzed using various techniques, such as content analysis, thematic analysis, and grounded theory. The findings of a case study are often used to develop theories, inform policy or practice, or generate new research questions.

Types of Case Study

Types and Methods of Case Study are as follows:

Single-Case Study

A single-case study is an in-depth analysis of a single case. This type of case study is useful when the researcher wants to understand a specific phenomenon in detail.

For Example , A researcher might conduct a single-case study on a particular individual to understand their experiences with a particular health condition or a specific organization to explore their management practices. The researcher collects data from multiple sources, such as interviews, observations, and documents, and uses various techniques to analyze the data, such as content analysis or thematic analysis. The findings of a single-case study are often used to generate new research questions, develop theories, or inform policy or practice.

Multiple-Case Study

A multiple-case study involves the analysis of several cases that are similar in nature. This type of case study is useful when the researcher wants to identify similarities and differences between the cases.

For Example, a researcher might conduct a multiple-case study on several companies to explore the factors that contribute to their success or failure. The researcher collects data from each case, compares and contrasts the findings, and uses various techniques to analyze the data, such as comparative analysis or pattern-matching. The findings of a multiple-case study can be used to develop theories, inform policy or practice, or generate new research questions.

Exploratory Case Study

An exploratory case study is used to explore a new or understudied phenomenon. This type of case study is useful when the researcher wants to generate hypotheses or theories about the phenomenon.

For Example, a researcher might conduct an exploratory case study on a new technology to understand its potential impact on society. The researcher collects data from multiple sources, such as interviews, observations, and documents, and uses various techniques to analyze the data, such as grounded theory or content analysis. The findings of an exploratory case study can be used to generate new research questions, develop theories, or inform policy or practice.

Descriptive Case Study

A descriptive case study is used to describe a particular phenomenon in detail. This type of case study is useful when the researcher wants to provide a comprehensive account of the phenomenon.

For Example, a researcher might conduct a descriptive case study on a particular community to understand its social and economic characteristics. The researcher collects data from multiple sources, such as interviews, observations, and documents, and uses various techniques to analyze the data, such as content analysis or thematic analysis. The findings of a descriptive case study can be used to inform policy or practice or generate new research questions.

Instrumental Case Study

An instrumental case study is used to understand a particular phenomenon that is instrumental in achieving a particular goal. This type of case study is useful when the researcher wants to understand the role of the phenomenon in achieving the goal.

For Example, a researcher might conduct an instrumental case study on a particular policy to understand its impact on achieving a particular goal, such as reducing poverty. The researcher collects data from multiple sources, such as interviews, observations, and documents, and uses various techniques to analyze the data, such as content analysis or thematic analysis. The findings of an instrumental case study can be used to inform policy or practice or generate new research questions.

Case Study Data Collection Methods

Here are some common data collection methods for case studies:

Interviews involve asking questions to individuals who have knowledge or experience relevant to the case study. Interviews can be structured (where the same questions are asked to all participants) or unstructured (where the interviewer follows up on the responses with further questions). Interviews can be conducted in person, over the phone, or through video conferencing.

Observations

Observations involve watching and recording the behavior and activities of individuals or groups relevant to the case study. Observations can be participant (where the researcher actively participates in the activities) or non-participant (where the researcher observes from a distance). Observations can be recorded using notes, audio or video recordings, or photographs.

Documents can be used as a source of information for case studies. Documents can include reports, memos, emails, letters, and other written materials related to the case study. Documents can be collected from the case study participants or from public sources.

Surveys involve asking a set of questions to a sample of individuals relevant to the case study. Surveys can be administered in person, over the phone, through mail or email, or online. Surveys can be used to gather information on attitudes, opinions, or behaviors related to the case study.

Artifacts are physical objects relevant to the case study. Artifacts can include tools, equipment, products, or other objects that provide insights into the case study phenomenon.

How to conduct Case Study Research

Conducting a case study research involves several steps that need to be followed to ensure the quality and rigor of the study. Here are the steps to conduct case study research:

• Define the research questions: The first step in conducting a case study research is to define the research questions. The research questions should be specific, measurable, and relevant to the case study phenomenon under investigation.
• Select the case: The next step is to select the case or cases to be studied. The case should be relevant to the research questions and should provide rich and diverse data that can be used to answer the research questions.
• Collect data: Data can be collected using various methods, such as interviews, observations, documents, surveys, and artifacts. The data collection method should be selected based on the research questions and the nature of the case study phenomenon.
• Analyze the data: The data collected from the case study should be analyzed using various techniques, such as content analysis, thematic analysis, or grounded theory. The analysis should be guided by the research questions and should aim to provide insights and conclusions relevant to the research questions.
• Draw conclusions: The conclusions drawn from the case study should be based on the data analysis and should be relevant to the research questions. The conclusions should be supported by evidence and should be clearly stated.
• Validate the findings: The findings of the case study should be validated by reviewing the data and the analysis with participants or other experts in the field. This helps to ensure the validity and reliability of the findings.
• Write the report: The final step is to write the report of the case study research. The report should provide a clear description of the case study phenomenon, the research questions, the data collection methods, the data analysis, the findings, and the conclusions. The report should be written in a clear and concise manner and should follow the guidelines for academic writing.

Examples of Case Study

Here are some examples of case study research:

• The Hawthorne Studies : Conducted between 1924 and 1932, the Hawthorne Studies were a series of case studies conducted by Elton Mayo and his colleagues to examine the impact of work environment on employee productivity. The studies were conducted at the Hawthorne Works plant of the Western Electric Company in Chicago and included interviews, observations, and experiments.
• The Stanford Prison Experiment: Conducted in 1971, the Stanford Prison Experiment was a case study conducted by Philip Zimbardo to examine the psychological effects of power and authority. The study involved simulating a prison environment and assigning participants to the role of guards or prisoners. The study was controversial due to the ethical issues it raised.
• The Challenger Disaster: The Challenger Disaster was a case study conducted to examine the causes of the Space Shuttle Challenger explosion in 1986. The study included interviews, observations, and analysis of data to identify the technical, organizational, and cultural factors that contributed to the disaster.
• The Enron Scandal: The Enron Scandal was a case study conducted to examine the causes of the Enron Corporation’s bankruptcy in 2001. The study included interviews, analysis of financial data, and review of documents to identify the accounting practices, corporate culture, and ethical issues that led to the company’s downfall.
• The Fukushima Nuclear Disaster : The Fukushima Nuclear Disaster was a case study conducted to examine the causes of the nuclear accident that occurred at the Fukushima Daiichi Nuclear Power Plant in Japan in 2011. The study included interviews, analysis of data, and review of documents to identify the technical, organizational, and cultural factors that contributed to the disaster.

Application of Case Study

Case studies have a wide range of applications across various fields and industries. Here are some examples:

Business and Management

Case studies are widely used in business and management to examine real-life situations and develop problem-solving skills. Case studies can help students and professionals to develop a deep understanding of business concepts, theories, and best practices.

Case studies are used in healthcare to examine patient care, treatment options, and outcomes. Case studies can help healthcare professionals to develop critical thinking skills, diagnose complex medical conditions, and develop effective treatment plans.

Case studies are used in education to examine teaching and learning practices. Case studies can help educators to develop effective teaching strategies, evaluate student progress, and identify areas for improvement.

Social Sciences

Case studies are widely used in social sciences to examine human behavior, social phenomena, and cultural practices. Case studies can help researchers to develop theories, test hypotheses, and gain insights into complex social issues.

Law and Ethics

Case studies are used in law and ethics to examine legal and ethical dilemmas. Case studies can help lawyers, policymakers, and ethical professionals to develop critical thinking skills, analyze complex cases, and make informed decisions.

Purpose of Case Study

The purpose of a case study is to provide a detailed analysis of a specific phenomenon, issue, or problem in its real-life context. A case study is a qualitative research method that involves the in-depth exploration and analysis of a particular case, which can be an individual, group, organization, event, or community.

The primary purpose of a case study is to generate a comprehensive and nuanced understanding of the case, including its history, context, and dynamics. Case studies can help researchers to identify and examine the underlying factors, processes, and mechanisms that contribute to the case and its outcomes. This can help to develop a more accurate and detailed understanding of the case, which can inform future research, practice, or policy.

Case studies can also serve other purposes, including:

• Illustrating a theory or concept: Case studies can be used to illustrate and explain theoretical concepts and frameworks, providing concrete examples of how they can be applied in real-life situations.
• Developing hypotheses: Case studies can help to generate hypotheses about the causal relationships between different factors and outcomes, which can be tested through further research.
• Providing insight into complex issues: Case studies can provide insights into complex and multifaceted issues, which may be difficult to understand through other research methods.
• Informing practice or policy: Case studies can be used to inform practice or policy by identifying best practices, lessons learned, or areas for improvement.

Advantages of Case Study Research

There are several advantages of case study research, including:

• In-depth exploration: Case study research allows for a detailed exploration and analysis of a specific phenomenon, issue, or problem in its real-life context. This can provide a comprehensive understanding of the case and its dynamics, which may not be possible through other research methods.
• Rich data: Case study research can generate rich and detailed data, including qualitative data such as interviews, observations, and documents. This can provide a nuanced understanding of the case and its complexity.
• Holistic perspective: Case study research allows for a holistic perspective of the case, taking into account the various factors, processes, and mechanisms that contribute to the case and its outcomes. This can help to develop a more accurate and comprehensive understanding of the case.
• Theory development: Case study research can help to develop and refine theories and concepts by providing empirical evidence and concrete examples of how they can be applied in real-life situations.
• Practical application: Case study research can inform practice or policy by identifying best practices, lessons learned, or areas for improvement.
• Contextualization: Case study research takes into account the specific context in which the case is situated, which can help to understand how the case is influenced by the social, cultural, and historical factors of its environment.

Limitations of Case Study Research

There are several limitations of case study research, including:

• Limited generalizability : Case studies are typically focused on a single case or a small number of cases, which limits the generalizability of the findings. The unique characteristics of the case may not be applicable to other contexts or populations, which may limit the external validity of the research.
• Biased sampling: Case studies may rely on purposive or convenience sampling, which can introduce bias into the sample selection process. This may limit the representativeness of the sample and the generalizability of the findings.
• Subjectivity: Case studies rely on the interpretation of the researcher, which can introduce subjectivity into the analysis. The researcher’s own biases, assumptions, and perspectives may influence the findings, which may limit the objectivity of the research.
• Limited control: Case studies are typically conducted in naturalistic settings, which limits the control that the researcher has over the environment and the variables being studied. This may limit the ability to establish causal relationships between variables.
• Time-consuming: Case studies can be time-consuming to conduct, as they typically involve a detailed exploration and analysis of a specific case. This may limit the feasibility of conducting multiple case studies or conducting case studies in a timely manner.
• Resource-intensive: Case studies may require significant resources, including time, funding, and expertise. This may limit the ability of researchers to conduct case studies in resource-constrained settings.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

You may also like

Questionnaire – Definition, Types, and Examples

Observational Research – Methods and Guide

Quantitative Research – Methods, Types and...

Qualitative Research Methods

Explanatory Research – Types, Methods, Guide

Survey Research – Types, Methods, Examples

Community Research, Ethics, and the Impact of the Havasupai Case

The 2020 Advancing Ethical Research Conference (AER20) keynote address from Wylie Burke, MD, PhD, “Learning from Communities about Diversity and Justice”, discussed the implications of the lack of diversity in research. This is a real problem in genetic research: how can a full range of genetic variants be studied if a non-diverse population is assessed?

On the other hand, research on specific communities is also important. Community-based studies helped identify the sickle cell trait among African Americans and BRCA1 gene prevalence in the Ashkenazi Jewish population. Unfortunately, abuses in research, typically perpetrated on minority populations, have resulted in distrust of researchers and the research process by potential research participants.

Take, for instance, the breakdown in communications that occurred between the Havasupai Nation in Arizona and researchers at Arizona State University (ASU). Members of the Havasupai Nation, who had donated blood for genetic studies on type 2 diabetes, found out later that their samples had also been used in several other genetic studies concerning schizophrenia, alcoholism, and population inbreeding—all of which are taboo topics in the Havasupai culture. While these samples had been “de-identified” ( whether something can be truly de-identified is a topic for another blog ), the community from which the samples originated was known. As Dr. Burke stated in his talk, de-identification does not remove a group label.

The National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research published the Belmont Report in 1979 to identify the minimum ethical principles required for human subject research. The three basic principles for research involving human subjects are respect for persons, beneficence, and justice.

Respect for persons mandates individuals receive adequate information so an informed consent might be given freely. Participants should enter into research voluntarily and with adequate information. Informed consent is fulfilled when a competent person agrees to take part in a study after having expressed a clear grasp of all relevant facts related to the activity in question. Not only can failure to adhere to informed consent protocols be harmful to a community, it can permanently harm the credibility of a researcher, an institution, and research as a whole.

Justice ensures the fair distribution of the benefits and burdens of research. Here, tribal oversight was meant to ensure the potential for benefit from the research, but neither oversight nor true informed consent can occur for research that is unknown to the participants. 

In community research, when obtaining consent, a researcher must make sure the community is fully informed about the extent of the research. IRBs must ensure that the basic tenets of human subjects research are not violated when overseeing community research. But how can we accomplish this?

We must ensure consent is obtained and respected. In addition to confirming the requirements for informed and broad consent are found in the consent document, the documents must be understandable. A “ general description of the types of research that may be conducted with identifiable private information or identifiable biospecimens ” must be added to broad consent documents. Notice the regulations specify a “general description” of the types of research that may be conducted is required. How can a reviewer assess this and ensure the supplied description is not too vague?

In community research, a discussion with community leaders would be appropriate. In the Havasupai case, members signed a broad consent document to “study the causes of behavioral/medical disorders.” All of the tribe members believed that they were donating blood solely for the purpose of looking for a link to diabetes to improve the health in their community. After ASU investigators determined that the genetic link to diabetes seen in the other tribe did not exist among the Havasupai, they continued their research into medical disorders without seeking further consent from the tribe. Should the IRB have requested a description that was narrower than “behavioral/medical disorders”, or would “endocrine disorders” have been more appropriate?

We must ensure ongoing communication between the IRB and researchers. We must also inform them about the regulations applicable to their study. After a study has been approved, how can an IRB follow the secondary use of these data and specimens? In addition to narrowing the focus of the proposed potential future research uses listed in the consent form, performing study audits might be appropriate. Additionally, study approval letters could reiterate what types of studies are permissible under the approved consent and mention the requirement of further IRB review of additional studies and the potential need for re-consenting.

We must also ensure appropriate communication between researchers and subjects or the community. Not only must researchers confirm information in a consent has been properly conveyed, investigators wanting to perform further studies using the original samples must return to the community to obtain new informed consent for the additional research. It is vital that a researcher recognize and respect the values and beliefs of the community under study.

Dr. Parker began her career as a Regulatory and Compliance Analyst at a consulting firm, where she worked with clients, ranging from biotech start-ups to Fortune 500 companies, to plan and implement regulatory strategies, submissions, and research protocols. Her duties engaged her with several US governmental agencies, including FDA, USDA, and EPA.

Dr. Parker received a PhD in Molecular Endocrinology and Biochemistry from Purdue University, and completed her Post-Doctoral Fellowship in Biochemistry and Molecular Biology at the Indiana University School of Medicine Center for Diabetes Research. She has authored and published dozens of scientific articles in major peer-reviewed journals, holds a patent for a diagnostic assay, and is a member of PRIM&R and AAHRPP. She is Regulatory Affairs Certified (RAC) and a Certified IRB Professional (CIP).

Members of PRIM&R’s Blog Squad and other guest contributors are valued members of our community willing to share their insights. The views expressed in their posts do not necessarily reflect those of PRIM&R or its employees.

PRIM&R’s  next AER Conference  takes place virtually—in conjunction with our Social, Behavioral, and Educational Research Conference— November 16–19, 2021 . Browse the Advancing Justice and Equity track to find sessions on indigenous-centered approaches to the new Common Rule, leveraging community to strengthen research, and more.  Learn more and register online !

No comments! Be the first commenter?

Leave a reply cancel reply.

Academia.edu no longer supports Internet Explorer.

To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to  upgrade your browser .

Enter the email address you signed up with and we'll email you a reset link.

• We're Hiring!
• Help Center

Community case study research

Related Papers

Dianne Dredge

This paper examines progress in tourism planning and policy knowledge and identifies gaps and future directions for research. The study employs a post-structuralist perspective presented in two analytical movements: a bibliographic study of tourism policy and planning publications in Scopus and Science Direct and thematic analysis, plus an archaeological excavation. This combined approach pays attention to the disruptions, silences and diversity of knowledge in tourism policy and planning. It highlights the way tourism planning and policy has been problematized and reveals the social regularities shaping the production of tourism planning and policy knowledge. Multi-disciplinary, mainstream subjects related to destination development and management dominate while critical analysis of economic and political structures, interests and values is lagging. The results point to an urgent need to progress tourism planning and policy towards greater visibility, legitimacy and importance in tourism studies through more critical engagement with tourism public policy and planning practice.

Dianne Dredge , Tazim Jamal

Research performance is increasingly measured in terms of the number of publications, the quality of the outlet, citations and other key performance indicators. This performance driven approach means that output is viewed as the object of research rather than the knowledge created and researchers adopting methodologies that do not easily fit within this neoliberal paradigm experience tensions and dilemmas. This paper argues that researchers should be directly engaged, often embedded in the community, as a methodological necessity of social research: the researcher’s positionality involves a critical self-reflexive stance towards knowledge production and transformative change—it enables an ethical stance on the politics of placemaking and the discursive constructions by self and other, and facilitates responsibility to social action (performative praxis). On a practical note, tourism community case study has rewards and benefits for research productivity over the long term. Deep engagement in the complexities of wicked problems closes the gap between research and practice; allows personal and professional growth through reflexive engagement; assists exploring alternative knowledges; and increases the capacity for knowledge sharing and co-production of knowledge. Researchers’ self-reflexive accounts of engaging in embedded tourism case study are offered to illustrate the politics of co-knowledge production, performative action and change.

Stories of Practice: Tourism Planning and Policy

Analyses of contemporary tourism planning and policymaking practice at local to global scales is lacking and there is an urgent need for research that informs theory and practice. Illustrated with a set of cohesive, theoretically-informed, international case studies constructed through storytelling, this volume expands readers' knowledge about how tourism planning and policymaking takes place. Challenging traditional notions of tourism planning and policy processes, this book also provides critical insights into how theoretical concepts and frameworks are applied in tourism planning and policy making practice at different spatial scales. The book engages readers in the intellectual, political, moral and ethical issues that often surround tourism policymaking and planning, highlighting the great value of reflective learning grounded in the social sciences and revealing the complexity of tourism planning and policy.

In the current university environment, research performance is increasingly measured in terms of the number of publications, the quality of the outlet, citations and a raft of other key performance indicators. Whilst this approach might assist universities climb the world rankings, the mixed messages emerging about academic research performance are concerning. The current performance driven perspective towards publications means that output is viewed as the object of research rather than the knowledge contained within it and researchers adopting methodologies that do not easily fit within this neoliberal paradigm experience tensions and dilemmas. This paper argues that despite its time consuming nature and the need for researchers to be deeply engaged, often embedded in the community, tourism community case study has rewards and benefits for research productivity over the long term. Community case study in tourism affords deep engagement in the complexities of the real world and wicked problems; closes the gap between research and practice; allows personal and professional growth through reflexive engagement; assists exploring alternative knowledges; and increases the capacity for knowledge sharing and the co-production of knowledge with the community. The researchers’ accounts of engaging in tourism case study are offered.

Roberta L Sogayar

This chapter discusses tourism education for sustainability with a particular focus on the challenges and opportunities associated with preparing students to work within complex tourism governance settings. It takes the position that the development of tourism within a sustainability framework requires that tourism professionals effectively engage in dynamic social discourses where difficult trade-offs are made between competing demands. The challenge for tourism education is therefore to prepare graduates to work in these complex, value-laden, socio-political environments where they can proactively and positively contribute to developing forms of tourism that progress the objectives of sustainable development. This chapter explores this challenge in terms of a philosophic tourism practitioner education, and in doing so, discusses three key dimensions of this education: historical antecedents and contemporary knowledge and understandings of governance; competencies for tourism governance for sustainability; and ethical action-oriented practice.

NOR AIN ABD RANI

Journal of Sustainable Tourism

This paper develops critical understandings of the theoretical and practical implications of local tourism policy networks on collaborative planning. Application of the network concept in tourism has increased in recent years but has largely been focused on the competitive advantages of network organisation for small and medium size tourism enterprises. Critical discussion and development of the theoretical and operational dimensions of networks as a management approach beyond economic development has been limited. It is argued that network theory provides a useful lens for understanding the structures and social interrelations between government, tourism producers and civil society and, as such, has the potential to inform collaborative destination management policy and practice. This paper examines the contributions that networks can make in understanding collaborative planning, and how this knowledge may be able to improve collaborative planning practice.

This article proposes a progressive, experiential and collaborative approach to sustainable tourism pedagogy (STP). Six core STP literacies (technical, analytical, ecological, multi cultural, ethical, policy and political) are identified, which guide skill and knowledge development for the sustainability practitioner. These are facilitated through experiential education in the fi eld that facilitates critical thinking, practical knowledge and participatory action. It is argued that a critical reflexive stance combined with a collaborative community service-learning approach in STP enables phronesis (practical wisdom) and praxis (social change). A case example is provided of an academic-community collaboration involving undergraduate students, local public and private sector stakeholders, plus diverse rural residents that came together temporarily to explore a cultural heritage issue and challenge. This collaboration facilitated collaborative learning , diverse community involvement and community service. The case overview illustrates a teaching opportunity that conveys how some of these STP priorities were undertaken, including the need for critical social action (to address not only environmental issues but also social-cultural sustainability issues related to the well-being of minority, marginalized and diverse populations).

Tourism Management

As a set of economic activities, tourism trades on the character of special places. Conflict can emerge where local residents perceive that tourism development proposals challenge the special qualities of place, and where place meaning and attachments are compromised. A key function of government in mediating conflict is to protect public interests, yet explicit consideration of public interest in tourism development conflict is unusual. This paper argues for a reinvigoration of public interest in the mediation of tourism development conflicts. It explores the concept of public interest and how governments interpret and give meaning to it in development debates. In a case study of a cruise ship terminal proposal on the Gold Coast, Australia, the state adopted a neoliberal interpretation of public interest wherein increased global competitiveness of the destination was the overriding common good pursued. Local and diverse interests were marginalised in the debate. The paper concludes that in order to reinvigorate public interest, a public interest evaluation framework for tourism development is needed.

RELATED PAPERS

Contemporary Tourism Reviews

Justin Taillon

Egbert van der Zee

Emily Höckert

Dianne Dredge , Michelle Whitford

Tourism Geographies

Ian R Lamond

Pierre Benckendorff

Journal of Policy Research in Tourism, …

Current Issues in Tourism

Journal of …

Tourism Recreation Research

Cheryl Cockburn-Wootten

Dr. Dean Hristov

Brian E M King , Paul A Whitelaw

AAU Project

Axel L Eriksson

Freya Higgins-Desbiolles

Professor Dimitrios Buhalis

The Arctic Yearbook

Daniela Chimirri

Environment and Planning C: Politics and Space

Kalyan Bhandari

Antonia Canosa, PhD , Erica Wilson

José-Carlos García-Rosell

Asst. Prof. Dr. Armando Aliu , Dorian Aliu

James Kennell

Christine A Vogt , Evan Jordan , Linda Kruger

Kirsten Böttger

Kajsa G Åberg

C. Michael Hall , Alberto Amore

WONDIRAD Amare Nega (Ph.D.)

Vlatka Skokic

Bent Flyvbjerg

Pierre Benckendorff , Paul Weeks , Paul A Whitelaw

RELATED TOPICS

•   We're Hiring!
•   Help Center
• Find new research papers in:
• Health Sciences
• Earth Sciences
• Cognitive Science
• Mathematics
• Computer Science
• Academia ©2024

• Liberty University
• Jerry Falwell Library
• Special Collections
• < Previous

Home > ETD > Doctoral > 5646

Doctoral Dissertations and Projects

A case study of online discussion boards for first year college students: a qualitative case study.

Eric Cummings , Liberty University Follow

School of Education

Doctor of Education in Curriculum & Instruction (EdD)

first-year students, online learning, higher education, sociocultural theory, community of inquiry

Disciplines

Adult and Continuing Education | Online and Distance Education

Recommended Citation

Cummings, Eric, "A Case Study of Online Discussion Boards for First Year College Students: A Qualitative Case Study" (2024). Doctoral Dissertations and Projects . 5646. https://digitalcommons.liberty.edu/doctoral/5646

The purpose of this case study was to understand first-year college students’ perspectives on online discussion boards in the context of learning, via the community of inquiry framework. The theory guiding this study is Lev Vygotsky’s sociocultural theory, which identifies how learners create their own learning experiences in the classroom. The theory’s value comes from it being used to understand student thought in discussion boards, which is the study’s focus. A case study was the design, and the goal was to gather empirical data from discussion board experiences from students. The central research question was What are the experiences of a group of first-year nontraditional students engaged in a discussion board for a virtual English composition course? Fourteen students, 13 females and one male, made up the sample. Their discussion board responses, individual interviews, and group study recordings represent the qualitative data. All data were collected in a virtual setting via the online classroom, as well as Zoom. Interpretational phenomenological analysis was employed to analyze student interview responses, the group study, and discussion board responses to uncover themes in the data. The study found four significant themes during the analysis phase. First, the participants took little satisfaction in the social presence in the discussion board due to a lack of social opportunities. However, the participants did enjoy instructor presence, thanks to quick, encouraging, and critical responses. In addition, the participants did not exhibit a sense of critical thinking and seemed to participate with mostly the minimum requirement. It is hoped this research will act as a foundation for additional exploration into the community of inquiry’s relationship with online learning by providing starting points for answers to the issue of online student engagement.

Since May 22, 2024

Included in

Adult and Continuing Education Commons , Online and Distance Education Commons

• Collections
• Faculty Expert Gallery
• Theses and Dissertations
• Conferences and Events
• Open Educational Resources (OER)
• Explore Disciplines

Advanced Search

• Notify me via email or RSS .

Faculty Authors

• Submit Research
• Expert Gallery Login

Student Authors

• Undergraduate Submissions
• Graduate Submissions
• Honors Submissions

Home | About | FAQ | My Account | Accessibility Statement

Privacy Copyright

Mental disorders may spread in young people's social networks

Using population-wide registry data, researchers from the University of Helsinki, the Finnish Institute for Health and Welfare, the University of Jyväskylä and the University of Manchester investigated whether mental disorders can be transmitted within social networks formed by school classes.

The study is the largest and most comprehensive so far on the spread of mental disorders in social networks, with more than 700,000 ninth-grade pupils from 860 Finnish schools participating. The adolescents were followed from the end of ninth grade for a median of 11 years.

The researchers demonstrated that the number of classmates diagnosed with a mental disorder was associated with a higher risk of receiving a mental disorder diagnosis later in life.

"The observed link was the strongest during the first year of follow-up in the study. This was not explained by a number of factors related to parents, school and residential area. The link was most pronounced in the case of mood, anxiety and eating disorders," says Associate Professor Christian Hakulinen of the University of Helsinki.

Research enabled by comprehensive Finnish registers

According to Hakulinen, prior studies have yielded similar results: for example, American researchers have observed indications of depressive symptoms potentially being transmitted from one individual to another in social networks.

In prior research, however, social networks have typically been chosen independently by the research subjects, which may result in bias in the data. Hakulinen points out that school classes are social networks well suited to research, as people are usually not able to choose their classmates.

"Defining the social networks and following adolescents were made possible by extensive Finnish registers. The findings significantly deepen our understanding of how mental health problems develop and affect other people in our social networks," he says.

Hakulinen nevertheless notes that the connection observed in the study is not necessarily causal. Furthermore, the study did not investigate how mental disorders can potentially be transmitted between individuals.

"It may be possible, for instance, that the threshold for seeking help for mental health issues is lowered when there are one or more people in your social network who have already sought help for their problems. In fact, this kind of normalisation of diagnosis and treatment can be considered beneficial contagion of mental disorders," Hakulinen says.

More preventive measures?

Mental disorders are a significant global challenge, adversely affecting individuals, society and the economy. According to Hakulinen, anxiety and mood symptoms in particular have in recent years increased among young people.

Previous studies have shown that, in roughly half of all cases, the onset of mental disorders in adulthood occurs when people are under 18. In fact, Hakulinen emphasises the importance of preventive measures and early intervention.

"When taking preventive measures, it's worthwhile considering that mental disorders can spread from one adolescent to another," Hakulinen says.

The study involved a total of 713,809 Finnish citizens born between 1985 and 1997. The adolescents were investigated from the end of comprehensive school until they received their first mental disorder diagnosis, relocated from the country or died. At the latest, the follow-up was discontinued at the end of 2019, resulting in a median follow-up period of 11.4 years.

The study received funding from the European Research Council (ERC) and the Research Council of Finland.

• Mental Health Research
• Down Syndrome
• Chronic Illness
• Children's Health
• Mental Health
• Disorders and Syndromes
• Mental illness
• Personality disorder
• Psychopathology
• Eating disorder
• Social cognition
• Controversy about ADHD
• Sleep disorder

Story Source:

Materials provided by University of Helsinki . Note: Content may be edited for style and length.

Journal Reference :

• Jussi Alho, Mai Gutvilig, Ripsa Niemi, Kaisla Komulainen, Petri Böckerman, Roger T. Webb, Marko Elovainio, Christian Hakulinen. Transmission of Mental Disorders in Adolescent Peer Networks . JAMA Psychiatry , 2024; DOI: 10.1001/jamapsychiatry.2024.1126

Cite This Page :

Explore More

• Global Clean Water Crisis Looms Large
• 'Exo-Venus' With Earth-Like Temps
• Ants Forage Better When Given a Little Caffeine
• Key Nutrients Linked to Slower Brain Aging
• Milk from 1940s Had Antibiotic Resistance
• World Leaders Need to Wake Up to AI Risks
• How Insects Smell More With Less
• Prehistoric European Culinary Traditions
• 'Major' Ancient Migration to Timor Island
• Ancient Viral DNA: Psychiatric Disorders

Trending Topics

Strange & offbeat.

Your company may already be a member. View our member list to find out, or create a new account .

Forgot Password?

Content Library

You can search our content library for case studies, research, industry insights, and more.

You can search our website for events, press releases, blog posts, and more.

How Heinz Engaged the Running Community with Custom Run Map

May 19, 2024    

With runners turning to its ketchup packets to help fuel their runs, Heinz created a series of routes on popular running apps, showcasing locations where participants could find the brand’s ketchup packets while on the go.

This Is an ANA Member Exclusive

Access to this item is reserved for ANA members only.

Already have an account? The industry's best insights and resources await:

No Account?

Use your business email address to create your free account ; if you're a member through your company, we'll know.

Members can access their benefits as soon as they sign up and log in.

Not a Member?

You can still create a free account to access the latest from our online publication, ANA Magazine , receive content and special event offers through our newsletters, get breaking industry updates, and so much more.

The content you're trying to see is available to:

• ANA Client-Side Marketer Tier Members
• Platinum Tier Members
• Gold Tier Members
• Silver Tier Members
• Individual Members

Discover everything the ANA can do to help drive growth for your organization. Connect with our membership team.

Log in using your username and password

• Search More Search for this keyword Advanced search
• Latest content
• Current issue
• BMJ Journals More You are viewing from: Google Indexer

You are here

• Online First
• Pedestrian safety on the road to net zero: cross-sectional study of collisions with electric and hybrid-electric cars in Great Britain
• Article Text
• Article info
• Citation Tools
• Rapid Responses
• Article metrics

• http://orcid.org/0000-0003-4431-8822 Phil J Edwards ,
• Siobhan Moore ,
• Craig Higgins
• London School of Hygiene & Tropical Medicine , London , UK
• Correspondence to Dr Phil J Edwards, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK; phil.edwards{at}LSHTM.ac.uk

Background Plans to phase out fossil fuel-powered internal combustion engine (ICE) vehicles and to replace these with electric and hybrid-electric (E-HE) vehicles represent a historic step to reduce air pollution and address the climate emergency. However, there are concerns that E-HE cars are more hazardous to pedestrians, due to being quieter. We investigated and compared injury risks to pedestrians from E-HE and ICE cars in urban and rural environments.

Methods We conducted a cross-sectional study of pedestrians injured by cars or taxis in Great Britain. We estimated casualty rates per 100 million miles of travel by E-HE and ICE vehicles. Numerators (pedestrians) were extracted from STATS19 datasets. Denominators (car travel) were estimated by multiplying average annual mileage (using National Travel Survey datasets) by numbers of vehicles. We used Poisson regression to investigate modifying effects of environments where collisions occurred.

Results During 2013–2017, casualty rates per 100 million miles were 5.16 (95% CI 4.92 to 5.42) for E-HE vehicles and 2.40 (95%CI 2.38 to 2.41) for ICE vehicles, indicating that collisions were twice as likely (RR 2.15; 95% CI 2.05 to 2.26) with E-HE vehicles. Poisson regression found no evidence that E-HE vehicles were more dangerous in rural environments (RR 0.91; 95% CI 0.74 to 1.11); but strong evidence that E-HE vehicles were three times more dangerous than ICE vehicles in urban environments (RR 2.97; 95% CI 2.41 to 3.7). Sensitivity analyses of missing data support main findings.

Conclusion E-HE cars pose greater risk to pedestrians than ICE cars in urban environments. This risk must be mitigated as governments phase out petrol and diesel cars.

• WOUNDS AND INJURIES
• CLIMATE CHANGE

Data availability statement

Data are available in a public, open-access repository. Numerator data (numbers of pedestrians injured in collisions) are publicly available from the Road Safety Data (STATS19) datasets ( https://www.data.gov.uk/dataset/cb7ae6f0-4be6-4935-9277-47e5ce24a11f/road-safety-data ). Denominator data (100 million miles of car travel per year) may be estimated by multiplying average annual mileage by numbers of vehicle registrations (publicly available from Department for Transport, https://www.gov.uk/government/statistical-data-sets/veh02-licensed-cars ). Average annual mileage for E-HE and ICE vehicles may be estimated separately for urban and rural environments using data that may obtained under special licence from the National Travel Survey datasets ( http://doi.org/10.5255/UKDA-Series-2000037 ).

https://doi.org/10.1136/jech-2024-221902

Statistics from Altmetric.com

Request permissions.

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

WHAT IS ALREADY KNOWN ON THIS TOPIC

Electric cars are quieter than cars with petrol or diesel engines and may pose a greater risk to pedestrians.

The US National Highway Transportation Safety Agency found that during 2000–2007 the odds of an electric or hybrid-electric car causing a pedestrian injury were 35% greater than a car with a petrol or diesel engine.

The UK Transport Research Laboratory found the pedestrian casualty rate per 10 000 registered electric or hybrid-electric vehicles during 2005–2007 in Great Britain was lower than the rate for petrol or diesel vehicles.

WHAT THIS STUDY ADDS

In Great Britain during 2013–2017, pedestrians were twice as likely to be hit by an electric or hybrid-electric car than by a petrol or diesel car; the risks were higher in urban areas.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

The greater risk to pedestrian safety posed by electric or hybrid-electric cars needs to be mitigated as governments proceed to phase out petrol and diesel cars.

Drivers of electric or hybrid-electric cars must be cautious of pedestrians who may not hear them approaching and may step into the road thinking it is safe to do so, particularly in towns and cities.

Introduction

Many governments have set targets to reach net-zero emissions to help mitigate the harms of climate change. Short-term health benefits of reduced emissions are expected from better air quality with longer-term benefits from reduced global temperatures. 1

Transition to electric and hybrid-electric (E-HE) cars

One such target is to phase out sales of new fossil fuel-powered internal combustion engine (ICE) vehicles and replace these with E-HE vehicles. 2 3

Pedestrian safety

Road traffic injuries are the leading cause of death for children and young adults. 4 A quarter of all road traffic deaths are of pedestrians. 5 Concerns have been raised that E-HE cars may be more hazardous to pedestrians than ICE cars, due to being quieter. 6 7 It has been hypothesised that E-HE cars pose a greater risk of injury to pedestrians in urban areas where background ambient noise levels are higher. 8 However, there has been relatively little empirical research on possible impacts of E-HE cars on pedestrian road safety. A study commissioned for the US National Highway Transportation Safety Agency based on data from 16 States found that the odds of an E-HE vehicle causing a pedestrian injury were 35% greater than an ICE vehicle. 9 In contrast, a study commissioned by the UK Department for Transport found pedestrian casualty rates from collisions with E-HE vehicles during 2005–2007 were lower than for ICE vehicles. 10 Possible reasons for these conflicting results are that the two studies used different designs and estimated different measures of relative risk—the first used a case–control design and estimated an OR, whereas the second used a cross-sectional study and estimated a rate ratio. ORs will often differ from rate ratios. 11 Other reasons include differences between the USA and the UK in the amount and quality of walking infrastructure. 12

Aim and objectives

We aimed to add to the evidence base on whether E-HE cars pose a greater injury risk to pedestrians than ICE cars by analysing road traffic injury data and travel survey data in Great Britain.

We sought to improve on the previous UK study by using distance travelled instead of number of registered vehicles as the measure of exposure in estimation of collision rates.

The objectives of this study were:

To estimate pedestrian casualty rates for E-HE and ICE vehicles and to compare these by calculating a rate ratio;

To assess whether or not the evidence supports the hypothesis that casualty rate ratios vary according to urban or rural environments. 8

Study design

This study was an analysis of differences in casualty rates of pedestrians per 100 million miles of E-HE car travel and rates per 100 million miles of ICE car travel.

This study was set in Great Britain between 2013 and 2017.

Participants

The study participants were all pedestrians reported to have been injured in a collision with a car or a taxi.

The exposure was the type of propulsion of the colliding vehicle, E-HE or ICE. E-HE vehicles were treated as a single powertrain type, regardless of the mode of operation that a hybrid vehicle was in at the time of collision (hybrid vehicles typically start in electric mode and change from battery to combustion engine at higher speeds). 13

The outcome of interest was a pedestrian casualty.

Effect modification by road environment

We used the urban–rural classification 14 of the roads on which the collisions occurred to investigate whether casualty rate ratios comparing E-HE with ICE vehicles differed between rural and urban environments.

Data sources/measurement

Numerator data (numbers of pedestrians injured in collisions) were extracted from the Road Safety Data (STATS19) datasets. 15

Denominator data (100 million miles of car travel per year) were estimated by multiplying average annual mileage by numbers of vehicle registrations. 16 Average annual mileage for E-HE and ICE vehicles was estimated separately for urban and rural environments using data obtained under special licence from the National Travel Survey (NTS) datasets. 17 We estimated average annual mileage for the years 2013–2017 because the NTS variable for the vehicle fuel type did not include ‘hybrid’ prior to 2013 and data from 2018 had not been uploaded to the UK data service due to problems with the archiving process (Andrew Kelly, Database Manager, NTS, Department for Transport, 23 March 2020, personal communication). Denominators were thus available for the years 2013–2017.

Data preparation

The datasets for collisions, casualties and vehicles from the STATS19 database were merged using a unique identification number for each collision.

Statistical methods

We calculated annual casualty rates for E-HE and ICE vehicles separately and we compared these by calculating a rate ratio. We used Poisson regression models to estimate rate ratios with 95% CIs and to investigate any modifying effects of the road environment in which the collisions occurred. For this analysis, our regression model included explanatory terms for the main effects of the road environment, plus terms for the interaction between type of propulsion and the road environment. The assumptions for Poisson regression were met in our study: we modelled count data (counts of pedestrians injured), traffic collisions were independent of each other, occurring in different places over time, and never occurring simultaneously. Data preparation, management and analyses were carried out using Microsoft Access 2019 and Stata V.16. 18

Sensitivity analysis

We conducted an extreme case analysis where all missing propulsion codes were assumed to be ICE vehicles (there were over a 100 times more ICE vehicles than E-HE vehicles on the roads in Great Britain during our study period, 16 so missing propulsion is more likely to have been ICE).

The sample size for this study included all available recorded road traffic collisions in Great Britain during the study period. We estimated that for our study to have 80% power at the 5% significance level to show a difference in casualty rates of 2 per 100 miles versus 5.5 per 100 miles, we would require 481 million miles of vehicle travel in each group (E-HE and ICE); whereas to have 90% power at the 1% significance level to show this difference, 911 million miles of vehicle travel would be required in each group. Our study includes 32 000 million miles of E-HE vehicle travel and 3 000 000 million miles of ICE vehicle travel and therefore our study was sufficiently powered to detect differences in casualty rates of these magnitudes.

Between 2013 and 2017, there were 916 713 casualties from reported road traffic collisions in Great Britain. 120 197 casualties were pedestrians. Of these pedestrians, 96 285 had been hit by a car or taxi. Most pedestrians—71 666 (74%) were hit by an ICE car or taxi. 1652 (2%) casualties were hit by an E-HE car or taxi. For 22 829 (24%) casualties, the vehicle propulsion code was missing. Most collisions occurred in urban environments and a greater proportion of the collisions with E-HE vehicles occurred in an urban environment (94%) than did collisions with ICE vehicles (88%) ( figure 1 ).

• Download figure
• Open in new tab
• Download powerpoint

Flow chart of pedestrian casualties in collisions with E-HE or ICE cars or taxis from reported road traffic collisions in Great Britain 2013–2017. E-HE, electric and hybrid-electric; ICE, internal combustion engine.

Main results

During the period 2013 to 2017, the average annual casualty rates of pedestrians per 100 million miles were 5.16 (95% CI 4.92 to 5.42) for E-HE vehicles and 2.40 (95% CI 2.38 to 2.41) for ICE vehicles, which indicates that collisions with pedestrians were on average twice as likely (RR 2.15 (95% CI 2.05 to 2.26), p<0.001) with E-HE vehicles as with ICE vehicles ( table 1 ).

• View inline

Pedestrian casualties due to collisions with cars or taxis from reported road traffic collisions in Great Britain 2013–2017—by vehicle propulsion type

In our extreme case analysis, the 22 829 pedestrian casualties where vehicle propulsion was missing were all assumed to have been struck by ICE vehicles. In this case, average casualty rates of pedestrians per 100 million miles were 3.16 (95% CI 3.14 to 3.18) for ICE vehicles, which would indicate that collisions with pedestrians were on average 63% more likely (RR 1.63 (95% CI 1.56 to 1.71), p<0.001) with E-HE vehicles than with ICE vehicles ( table 2 ).

Extreme case sensitivity analysis—pedestrian casualties due to collisions with cars or taxis from reported road traffic collisions in Great Britain 2013–2017 by vehicle propulsion type where 22 829 missing vehicle propulsion codes are assumed to be ICE vehicles

Relative risks according to road environment

Casualty rates were higher in urban than rural environments ( tables 3 and 4 ).

Pedestrian casualties due to collisions with cars or taxis from reported road traffic collisions in Great Britain 2013–2017—by vehicle propulsion type in urban road environments

Pedestrian casualties due to collisions with cars or taxis from reported road traffic collisions in Great Britain 2013–2017—by vehicle propulsion type in rural road environments

Urban environments

Collisions with pedestrians in urban environments were on average over two and a half times as likely (RR 2.69 (95% CI 2.56 to 2.83, p<0.001) with E-HE vehicles as with ICE vehicles ( table 3 ).

The extreme case sensitivity analysis showed collisions with pedestrians in urban environments were more likely with E-HE vehicles (RR 2.05; 95% CI 1.95 to 2.15).

Rural environments

Collisions with pedestrians in rural environments were equally likely (RR 0.91; 95% CI 0.74 to 1.11) with E-HE vehicles as with ICE vehicles ( table 4 ).

The extreme case sensitivity analysis found evidence that collisions with pedestrians in rural environments were less likely with E-HE vehicles (RR 0.68; 95% CI 0.55 to 0.83).

Results of Poisson regression analysis

Our Poisson regression model results ( table 5 ) showed that pedestrian injury rates were on average 9.28 (95% CI 9.07 to 9.49) times greater in urban than in rural environments. There was no evidence that E-HE vehicles were more dangerous than ICE vehicles in rural environments (RR 0.91; 95% CI 0.74 to 1.11), consistent with our finding in table 4 . There was strong evidence that E-HE vehicles were on average three times more dangerous than ICE vehicles in urban environments (RR 2.97; 95% CI 2.41 to 3.67).

Results of Poisson regression analysis of annual casualty rates of pedestrians per 100 million miles by road environment and the interaction between vehicle propulsion type and environment

Statement of principal findings

This study found that in Great Britain between 2013 and 2017, casualty rates of pedestrians due to collisions with E-HE cars and taxis were higher than those due to collisions with ICE cars and taxis. Our best estimate is that such collisions are on average twice as likely, and in urban areas E-HE vehicles are on average three times more dangerous than ICE vehicles, consistent with the theory that E-HE vehicles are less audible to pedestrians in urban areas where background ambient noise levels are higher.

Strengths and weaknesses of the study

There are several limitations to this study which are discussed below.

The data used were not very recent. However, ours is the most current analysis of E-HE vehicle collisions using the STATS19 dataset.

Before we can infer that E-HE vehicles pose a greater risk to pedestrians than ICE vehicles, we must consider whether our study is free from confounding and selection bias. Confounding occurs when the exposure and outcome share a common cause. 19 Confounders in this study would be factors that may both cause a traffic collision and also cause the exposure (use of an E-HE car). Younger, less experienced drivers (ie, ages 16–24) are more likely to be involved in a road traffic collision 20 and are also more likely to own an electric car. 21 Some of the observed increased risk of electric cars may therefore be due to younger drivers preferring electric cars. This would cause positive confounding, meaning that the true relative risk of electric cars is less than we have estimated in our study. Regarding selection bias, it is known that the STATS19 dataset does not include every road traffic casualty in Great Britain, as some non-fatal casualties are not reported to the police. 22 If casualties from collisions are reported to the police differentially according to the type of vehicle propulsion, this may have biased our results; however, there is no reason to suspect that a pedestrian struck by a petrol or diesel car is any more or less likely to report the collision to the police than one struck by an electric car.

We must also address two additional concerns as ours is a cross-sectional study: The accuracy of exposure assignment (including the potential for recall bias) and the adequacy of prevalence as a proxy for incidence. 23 First, the accuracy of exposure assignment and the potential for recall bias are not issues for this study, as the exposure (type of propulsion of the colliding vehicle, E-HE or ICE), is assigned independently of the casualties by the UK Department for Transport who link the vehicle registration number (VRN) of each colliding vehicle to vehicle data held by the UK Driver Vehicle and Licensing Agency (DVLA). 10 Second, we have not used prevalence as a proxy for incidence but have estimated incidence using total distance travelled by cars as the measure of exposure.

We may therefore reasonably infer from our study results that E-HE vehicles pose a greater risk to pedestrians than ICE vehicles in urban environments, and that part of the risk may be due to younger people’s preference for E-HE cars.

A major limitation of the STATS19 road safety dataset used in this study was that it did not contain a vehicle propulsion code for all vehicles in collisions with pedestrians. We excluded these vehicles from our primary analysis (a complete case analysis) and we also conducted an extreme case sensitivity analysis. We will now argue why imputation of missing vehicle propulsion codes would not have added value to this study. Vehicle propulsion data are obtained for the STATS19 dataset by the UK Department for Transport who link the VRN of each colliding vehicle recorded in STATS19 to vehicles data held by the UK DVLA. The STATS19 data on reported collisions and casualties are collected by a Police Officer when an injury road accident is reported to them; Most police officers write details of the casualties and the vehicles involved in their notebooks for transcription onto the STATS19 form later at the Police station. 24 The VRN is one of 18 items recorded on each vehicle involved in a collision. Items may occasionally be missed due to human error during this process. Where a VRN is missing, vehicle propulsion will be missing in the STATS19 dataset. The chance that any vehicle-related item is missing will be independent of any characteristics of the casualties involved and so the vehicle propulsion codes are missing completely at random (MCAR). As the missing propulsion data are very likely MCAR, the set of pedestrians with no missing data is a random sample from the source population and hence our complete case analysis for handling the missing data gives unbiased results. The extreme case sensitivity analysis we performed shows a possible result that could occur, and it demonstrates our conclusions in urban environments are robust to the missing data. Lastly, to impute the missing data would require additional variables which are related to the likelihood of a VRN being missing. Such variables were not available and therefore we do not believe a useful multiple imputation analysis could have been performed.

Strengths and weaknesses in relation to other studies

Our study uses hundreds of millions of miles of car travel as the denominators in our estimates of annual pedestrian casualty rates which is a more accurate measure of exposure to road hazards than the number of registered vehicles, which was used as the denominator in a previous study in the UK. 10 Our results differ to this previous study which found that pedestrian casualty rates from collisions with E-HE vehicles during 2005–2007 were lower than those from ICE vehicles. Our study has updated this previous analysis and shows that casualty rates due to E-HE vehicle collisions exceed those due to ICE vehicle collisions. Similarly, our study uses a more robust measure of risk (casualty rates per miles of car travel) than that used in a US study. 9 Our study results are consistent with this US study that found that the odds of an E-HE vehicle causing a pedestrian injury were 35% greater than an ICE vehicle. Brand et al 8 hypothesised, without any supporting data, that “hybrid and electric low-noise cars cause an increase in traffic collisions involving vulnerable road users in urban areas” and recommended that “further investigations have to be done with the increase of low-noise cars to prove our hypothesis right.” 8 We believe that our study is the first to provide empirical evidence in support of this hypothesis.

Meaning of the study: possible explanations and implications for clinicians and policymakers

More pedestrians are injured in Great Britain by petrol and diesel cars than by electric cars, but compared with petrol and diesel cars, electric cars pose a greater risk to pedestrians and the risk is greater in urban environments. One plausible explanation for our results is that background ambient noise levels differ between urban and rural areas, causing electric vehicles to be less audible to pedestrians in urban areas. Such differences may impact on safety because pedestrians usually hear traffic approaching and take care to avoid any collision, which is more difficult if they do not hear electric vehicles. This is consistent with audio-testing evidence in a small study of vision-impaired participants. 10 From a Public Health perspective, our results should not discourage active forms of transport beneficial to health, such as walking and cycling, rather they can be used to ensure that any potential increased traffic injury risks are understood and safeguarded against. A better transport policy response to the climate emergency might be the provision of safe, affordable, accessible and integrated public transport systems for all. 25

Unanswered questions and future research

It will be of interest to investigate the extent to which younger drivers are involved in collisions of E-HE cars with pedestrians.

If the braking distance of electric cars is longer, 26 and electric cars are heavier than their petrol and diesel counterparts, 27 these factors may increase the risks and the severity of injuries sustained by pedestrians and require investigation.

As car manufacturers continue to develop and equip new electric cars with Collision Avoidance Systems and Autonomous Emergency Braking to ensure automatic braking in cases where pedestrians or cyclists move into the path of an oncoming car, future research can repeat the analyses presented in this study to evaluate whether the risks of E-HE cars to pedestrians in urban areas have been sufficiently mitigated.

Conclusions

E-HE vehicles pose a greater risk to pedestrians than petrol and diesel powered vehicles in urban environments. This risk needs to be mitigated as governments proceed to phase out petrol and diesel cars.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involves human participants and was approved by the LSHTM MSc Research Ethics Committee (reference #16400). The study uses the anonymised records of people injured in road traffic collisions, data which are routinely collected by UK police forces. The participants are unknown to the investigators and could not be contacted.

Acknowledgments

We thank Rebecca Steinbach for her advice on analysis of National Travel Survey data, Jonathan Bartlett for his advice on missing data, and Ben Armstrong for his advice on Poisson regression. We are grateful to the reviewers and to Dr C Mary Schooling, Associate Editor, whose comments helped us improve the manuscript. We are grateful to Jim Edwards and Graham Try for their comments on earlier versions of this manuscript.

• H Baqui A ,
• Benfield T , et al
• Gilchrist J
• ↵ WHO factsheet on road traffic injuries . Available : https://www.who.int/news-room/fact-sheets/detail/road-traffic-injuries#:~:text=Approximately%201.19%20million%20people%20die,adults%20aged%205%E2%80%9329%20years [Accessed 14 Apr 2024 ].
• ↵ Reported road casualties great Britain, annual report . 2022 . Available : https://www.gov.uk/government/statistics/reported-road-casualties-great-britain-annual-report-2022 [Accessed 14 Apr 2024 ].
• Maryland General Assembly
• Haas P , et al
• Morgan PA ,
• Muirhead M , et al
• Greenland S
• Buehler R ,
• Alternative Fuels Data Center
• Government-Statistics
• Department for Transport
• Department for Transport. (2023
• Hernán MA ,
• Hernández-Díaz S ,
• Barriers Direct
• Savitz DA ,
• Wellenius GA
• Transport Scotland

Contributors CH and PJE developed the idea for this study and supervised SM in performing the literature search, downloading, managing and analysing the data. SM wrote the first draft of the manuscript, which was the dissertation for her MSc in Public Health. PJE prepared the first draft of the manuscript for the journal. All authors assisted in editing and refining the manuscript. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. PJE (guarantor) accepts full responsibility for the work and the conduct of the study, had access to the data and controlled the decision to publish.

Funding This study was conducted in part fulfilment of the Masters degree in Public Health at the London School of Hygiene & Tropical Medicine. The second author was self-funded for her studies for this degree.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Read the full text or download the PDF: