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• Transl Behav Med
• v.11(2); 2021 Feb

Strategies of community engagement in research: definitions and classifications

Vetta l sanders thompson.

1 Washington University in St. Louis, Brown School, St. Louis, MO, USA

Nicole Ackermann

2 Washington University in St. Louis School of Medicine, St. Louis, MO, USA

Kyla L Bauer

Deborah j bowen.

3 University of Washington, Department of Bioethics and Humanities, Seattle, WA, USA

Melody S Goodman

4 New York University, School of Global Public Health, New York, NY, USA

Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health- and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process ( N = 19) via online and face-to-face survey and cognitive response interviews ( N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient- and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.

Implications

Practice: It is possible for researchers and stakeholders to clarify terminology so that roles, participation, and benefits are clear at each level of community engagement along the continuum.

Policy: Policymakers who want to encourage community-engaged research must consider similarities and differences that may emerge in community and academic perceptions of community-engaged research.

Research: Future research is needed to clarify the understanding and depiction of community engagement activities and strategies that guide measure development.

INTRODUCTION

As the scientific community increasingly focuses on translation and implementation of scientific discoveries [ 1–3 ], stakeholder engagement is receiving increased attention in research as a key component in the process of tailoring best practices for specific populations [ 4–6 ]. However, as ongoing research and analysis indicate [ 7 ], there continues to be a need to reach agreement on the terminology and definitions used in the field of engaged research. To examine critical issues in the field, a consortium was formed, composed of individuals from the USA, Canada, UK, and Australia who recognized the importance and potential impact of funder advancement of patient- and stakeholder-engaged research. One of the issues that the consortium members undertook was an examination of definitional issues in engaged research. The group recognized variation in the terminology used [ 7 ]. Thus, the authors recommended that consistent terminology and definitions be generated to promote the common understanding of strategies in engaged research. At the same time, the authors remained flexible, encouraging continued growth and innovation in the field. The recommendations included use of the term engagement as opposed to participation and involvement , which were deemed either overly narrow or too broad. The consortium proposed the definition of research engagement as “an active partnership between stakeholders and researchers in production of new healthcare knowledge and evidence” [ 7 ] (p. 7). The field’s acceptance of this foundational definition would suggest the need to clarify definitions of classifications and the continua of engagement.

In terms of engagement, the literature has consistently divided academic research into that which is considered nonengaged, advisory, symbolic, collaborative, or full engagement [ 8–11 ]. Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. In the continuum of engagement, engagement may represent an effort to share education and information with the community, but at another point on the continuum, engagement may involve shared decision-making throughout the research process. There seems to be agreement in the literature on the trajectory of the continua and what activities and strategies represent the endpoint of authentic engagement [ 5 , 8–11 ]. The continua proposed begin with none to limited stakeholder inclusion and input into research, and continue with descriptions of progressively increasing presence, input, and participation in decision-making. There seems to be less agreement on how stakeholder engagement strategies are defined and positioned along the continua proposed as researchers and stakeholders form collaborations and partnerships. For example, the number of strategies included and described varies, as does the inclusion of strategies such as education, outreach, and informational strategies. In addition, whether outreach and education, as well as informative and consultative strategies are combined varies in descriptions of the stakeholder engagement continua.

Fundamental to classifications of strategies for engaged research are the questions of whether, how, and when stakeholder voices are heard and carry weight and whether the voices of academic researchers overpower those of the nonacademic stakeholders [ 7 , 9–11 ]. If stakeholders are allowed to advise but the researchers have the ultimate decision-making power, stakeholder presence may give the appearance of engagement although the stakeholders may not be meaningfully engaged. Several scholars contend that meaningful engagement requires some shared decision-making [ 9–11 ]. Previously research suggested a classification system that moved from nonengaged to engaged participation [ 9 ]. Nonparticipation is represented by outreach and education , with researchers developing, implementing, and evaluating strategies to reach the community of interest and with researchers providing education to try to educate nonacademic stakeholders about a particular topic [ 9 ]. The continuum continues with symbolic participation , which includes the following: (a) coordination with researchers in which researchers gather community stakeholders together to assess important elements of a project or activity and in which community members provide feedback to academic researchers and (b) cooperation where researchers ask community members for help with a project, instead of just asking for advice. The final category on the continuum is collaboration , with two categories that reference researchers and community members being actively involved in the design and implementation of the project and in the interpretation of the findings. One of the two types of collaboration is patient-centered collaboration , with patients, caregivers, and advocacy groups determining the priority setting for research choices and controlling the design and implementation of the project activities in addition to the interpretation and publication of findings. The other type of collaboration is community-based participatory research (CBPR), which is a population health approach to the patient-centered engagement model [ 9 , 12 ].

In this paper, we report on efforts to subject our engagement classifications and definitions to researcher and stakeholder scrutiny and feedback. This paper seeks to understand the changes in classification and definition that were required to achieve agreement among researchers and stakeholders. Classifications and definitions that are agreed upon can serve as the foundation of a measure of engaged research that might allow comparisons among engagement strategies and the outcomes that they produce in a variety of health- and healthcare-related research studies.

The study and consent procedures described received institutional review board approval.

Development of definitions for stakeholder-engaged research classifications

The Disparities Elimination Advisory Committee (DEAC) of the Program for Elimination of Cancer Disparities (PECaD) of a comprehensive cancer center [ 12 ] worked collaboratively with study investigators to develop a standardized measure of stakeholder engagement [ 13 ]. In addition, this measurement development group sought a way to classify strategies of engaged research and, specifically, how programs and projects adhered to community engagement principles. The team initiated discussion using the definition of stakeholder-engaged research provided by the CDC [ 13 ] and the principles outlined in the work of Israel [ 10 , 11 ]. The process began in April 2014 with DEAC members ( n = 15) participating in a focus group on perceptions of the implementation of CBPR principles used in each PECaD project and by each PECaD cancer partnership. The DEAC members consisted of 3 (20%) men, 12 (80%) women, 8 (53%) Black, 5 (33%) White, and 2 (13%) Native American participants.

As work proceeded, the DEAC members and the academic researchers used the definition of patient-engaged research —as offered by the Patient-Centered Outcomes Research Institute (PCORI) [ 14 ]—to develop definitions for the strategies included on the continuum of stakeholder-engaged research: coordination, cooperation, patient-centered collaboration, and CBPR collaboration [ 9 ]. PCORI defines patient-engaged research as, “The meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process—from planning the study, to conducting the study, and disseminating study results” [ 14 ]. In the spring of 2017, the research team conducted an extensive literature review on measures of community engagement, which led to revised definitions.

The final iteration of the effort involved additional input from the DEAC members and the Patient Research Advisory Board (PRAB) at a mid-western school of medicine [ 15 ]. The PRAB includes the alumni of a program that provided a 15-week training program on research methods, who are certified to conduct research with human subjects by the university human research protections office. The PRAB is designed to help investigators with community-engaged or community-based research proposals/projects by having community members review proposals and give feedback. The additional interaction with DEAC and PRAB resulted in the addition of a fifth category of engagement: outreach and education [ 9 ]. In the spring of 2017, study investigators reviewed PCORI-funded projects for definitions and examples of engagement that were used in patient-centered outcomes research and activities. The definitions were presented to the DEAC members for comment in April 2017. To obtain more in-depth input and feedback, volunteers were solicited; six members (DEAC or PRAB members) agreed to provide feedback on the definitions in June 2017.

Delphi panel process

As CBPR practitioners, the research team believed that it was important that a measure of stakeholder-engaged research be developed in a way that was consistent with CBPR principles, particularly the inclusion of stakeholder input into the classification of engagement and their definitions. A modified Delphi process was designed to fulfill this goal; thus, the Delphi panel was convened. The Delphi method uses structured communication among individuals with expertise on a topic, with the goal of reaching agreement on a designated outcome [ 16 ]. The process involves administration of multiple rounds of individual surveys (online and in-person), with aggregation of responses and participant receipt of feedback on the group response for each round until reaching majority agreement.

Nineteen participants, composed of academic researchers and nonacademic members (see Table 1 ) with expertise in community engagement in research, were recruited through the authors’ networks and were asked to participate in a panel for a study on developing and validating a quantitative measure of community engagement in research [ 17 ]. The panel purposefully consisted of both stakeholders/community partners (57.9%) and academic researchers (42.1%). Most panelists did not focus on a specific disease or health condition in their work (57.9%). For the other panelists, the health conditions of focus included HIV/AIDS, hepatitis C, mental illnesses, respiratory illnesses, health behaviors and prevention, breast cancer, sickle cell, cancer in general, or hypertension. One panelist dropped after completing the first of the five rounds of the Delphi process, leaving 18 panelists remaining engaged throughout the entire process.

Demographics of Delphi panel ( N = 19)

CBPR community-based participatory research.

a Not all Delphi panel members were providers; nine were current or past service providers.

An introductory webinar was held to inform the panel members about the Delphi process. The introductory webinar was followed by three computer rounds, one face-to-face round, and a final computer round. In each round, panelists were asked whether they agreed or disagreed with the definitions for the classifications of stakeholder engagement research, and they were asked to suggest modifications. The goal of the process was to reach agreement (>80%).

Round 1 was focused on items that might measure strategies of stakeholder-engaged research. The stakeholder engagement classifications and definitions were presented to panelists in October 2017, during Round 2 of the Delphi process. The stakeholder engagement classifications and their definitions had been determined by the DEAC-PRAB working group. Input and refinement continued through Round 5 (August 2018). Rounds 2, 3, and 5 of the Delphi process were online surveys (via Qualtrics platform) that allowed for feedback. Round 4 was an in-person meeting conducted over 2 days [ 17 ]. Three polling activities took place at the in-person meeting during Round 4. There were eight people who could not attend the in-person meeting, but were able to participate by using an online meeting platform (GoToMeeting) or by submitting a premeeting survey before the first day. Three of the six panelists who completed the premeeting survey attended the in‐person meeting virtually at varied times throughout the 2‐day meeting. All but two panelists were able to participate in some format for Round 4. During the in-person meeting, notes were taken by the research team and a professional editor to explain key changes and areas of disagreement. The professional editor also checked for grammar and consistency issues.

The definitions for the proposed DEAC-PRAB stakeholder engagement classifications were based on a literature review and synthesis first presented by the research team [ 9 ]. The original strategies of engagement and their definitions, as informed by CDC/ATSDR [ 13 ], Israel [ 10 , 11 ], and the DEAC team [ 12 ], were the following:

• Outreach: Researchers develop, implement, and evaluate strategies to reach the target population. Key members of the target population (gatekeepers) can be engaged as advisors and can make key connections.
• Education: Researchers are trying to educate stakeholders about a particular topic. This is usually combined with outreach efforts to gain audiences for education sessions and/or materials.
• Coordination: Researchers gather community health stakeholders together to assess important elements of a project or activity. Community members give feedback, and this feedback informs researchers’ decisions. However, it is the researchers’ responsibility to design and implement the study with no help expected from the community members. Research and related programs are strengthened through community outreach, and results are disseminated through community groups and gatekeepers.
• Cooperation: Researchers ask community members for help with a project, instead of just asking for advice. There is some activity on the part of community members in defined aspects of the project, including recruitment, implementation of interventions, measurement, and interpretation of outcomes. Community health stakeholders are ongoing partners in the decision-making for the project. Community health stakeholders’ understanding of research and its potential importance are enhanced through participation in activities.
• Collaboration: Both researchers and community members are actively involved in the design and implementation of the project and in the interpretation of the findings. In addition, all stakeholders benefit in some way from working together, including increased capacity of community groups to engage in research implementation. Community health stakeholders collaborate in decision-making and resource allocation with an equitable balance of power that values input from the community health stakeholders.
• Patient-centered: Patients, caregivers, and advocacy groups dictate the priority setting for research choices and control the design and implementation of the project activities in addition to the interpretation and publication of findings. Researchers use their expertise to move these components along, but community health stakeholders make all major decisions about research approaches. Systems are in place for patient participation in research at all points of the engagement continuum. Community health stakeholders have the capacity to engage in partnerships with an equitable balance of power for governance and a strong level of accountability to the public or community.
• Community-based participatory research: CBPR is the population health approach to the patient-centered engagement model. The principles of CBPR highlight trust among partners, respect for each partner’s expertise and contributions, mutual benefit among all partners, and a community-driven partnership with equitable and shared decision-making [ 9 ] (p. 487).

Cognitive response interviews

Cognitive response interviews were conducted to identify problems with survey items and definition wording and to help us modify the definitions to improve their use in community-engaged research [ 18 ]. Cognitive response interviewing is an evidence-based method of examining participant understanding and interpretation of survey items. Participants are asked to answer questions about their interpretation of items, paraphrase items, and identify words, phrases, or item components that are problematic [ 18 ], after each individually present item.

A purposive sample of 16 individuals (see Table 2 ) was recruited to complete one-on-one cognitive response interviews in November of 2018. Eligibility criteria for the cognitive response interviews were that participants had to be adults (18 years or older) and that they had to have experience partnering with researchers on patient- or community-engaged research. Participants were recruited through a database of alumni who had completed the Community Research Fellows Training (CRFT) program in a mid-western city [ 19 ] and through referral by CRFT alumni. CRFT was established in 2013 and maintains an opt-in database of graduates of four cohorts ( n = 125), 94 (75%) of whom are active alumni and have updated contact information.

Demographics of cognitive interview participants ( N = 16)

GED general education diploma; HS high school.

Interviewer training and interviews

The lead author of the manuscript trained the project manager and two research assistants ( n = 4 interviewers, including the lead author) on how to conduct in-depth cognitive interviewing to ensure consistent interview and data collection procedures. The training also provided an orientation to the interview guide and protocol. The project manager provided interviewers instruction on the use of tablets to administer the cognitive response interview to assure consistency and ease of administration. Although tablets were used during the interview to capture responses to survey items and quantitative questions, computer-assisted personal interview software was not used, and participant qualitative responses were captured using a digital recorder.

The one-on-one, semistructured interviews were completed in person. In order to assure that respondents understood their role in the cognitive response interviews, interviewers explained that the purpose of the interview was to identify problems with survey items and definition wording and to help us modify the definitions to improve their use in community-engaged research. The interviews lasted 90–120 min, and each session’s digital recording was professionally transcribed. Each individual received a $50 gift card for participation. Each participant completed 16 (50%) of 32 items on the quality and 16 (50%) of 32 items quantity scales. Interviews were conducted using verbal probing after participant responses.

The primary means of administering survey questions was by tablet, participants were provided with the option to use a paper version if preferred. Participants were then presented with six classifications of stakeholder-engaged research definitions, which were presented in pairs, and the participants were asked to explain the difference between them for a total of three separate comparisons. To minimize the impact that the order of questions had on the overall results, we used four different versions of the questionnaire, which listed definition comparisons in different orders, and we randomly assigned the questionnaires to participants.

Coding and analysis

After reviewing the project goals, the content of the interviews, and the existing literature, the first author developed a defined coding guide that prescribed rules and categories for identifying and recording content. The coding was completed in three phases. In the first phase, the study investigator and one research assistant coded the transcripts based on the participant’s discernment (understood or misunderstood) for definitions. Additional codes were developed to note if participants’ explanations included certain keywords or themes (e.g., control/power, decision-making). The coders read and coded the interview transcripts individually, identifying text units that addressed the participants’ understanding of engagement definitions and rationale for differentiating between the classifications of stakeholder-engaged research.

In the second phase of coding, the two coders (the senior investigator and the research assistant) met to reach agreement on the definitions and examples used to code the interview transcripts. Finally, on completion of coding and development of agreement, the coders reconvened to formulate core ideas and general themes that emerged from each interview.

Results of polling and discussion on Delphi panel definitions

The Delphi panel provided input and voted on three iterations of engagement strategies and definitions during Rounds 2 through 5 (see Figure 1 ) to reach agreement (94.4%–100.0%; Table 3 ). At the end of Round 2 of the Delphi process, nonacademic researchers reached strong agreement on definitions of the engaged research classification: outreach and education (80%), coordination (100%), cooperation (90%), patient-centered collaboration (100%), and CBPR collaboration (100%). However, academic stakeholders did not reach strong agreement on any of the definitions: outreach and education (75%), coordination (75%), cooperation (75%), patient-centered collaboration (75%), and CBPR collaboration (75%). In Round 3, academic researchers reached strong agreement only on the definition for cooperation (88%, ranged from 63% to 75% for all others), while nonacademic researchers reached strong agreement on all definitions, 80%–100% (80% agreement for collaboration, 90% for outreach and engagement, 100% for both cooperation and consultation). Also, collaboration, which had been of two types previously, was classified as one category in Round 3 and coordination was renamed consultation. A fifth classification of engaged research, partnership, was added in Round 4 and remained in Round 5. The in-person meeting and discussion (Round 4) made a substantial difference in reconciling divergent perspectives on classification definitions (see Table 3 ), reaching 80% agreement among participants. However, lower and variable participation (no participation, presurvey/on and off virtual, presurvey only) may have influenced the flow and direction of the discussion, affecting the validity of the Round 4 process. Because some panelists did not vote and to assure that everyone’s input was incorporated, a final online round, Round 5, was completed. Only one dissenting opinion was recorded in the last online survey (Round 5), and this was for the collaboration definition (see Table 3 ).

Agreement of Delphi panel in online surveys on definitions in the community-engaged research continuum

CBPR community-based participatory research; PC patient centered.

a Delphi panel members voting on the Round 4 surveys (present or online); N = 13 for Day 2 voting on partnership (due to the number of virtual participants differing throughout the day).

b Collaboration–CBPR and Collaboration–PC were combined as a classification during the first revision and changed to Collaboration in Round 3.

Change of categories in continuum of community-engaged research, Rounds 2–5 of Delphi panel.

On the basis of the Round 2 survey feedback, academic researcher members of the Delphi panel wanted definitions to be more concise, and they expressed concerns about terminology used to categorize the strategies of engagement. In particular, their concerns were related to differences in how the categories were represented in the community-based participatory and patient-centered research literatures. Community members seemed most concerned that definitions state exactly how community members would be provided services (e.g., provision of culturally appropriate education) and how they would be involved in research (i.e., in outreach efforts). In the Round 3 definitions, academic researchers, again, called for concise terms to improve applicability, while community members had fewer suggestions and mostly small edits (e.g., do not use the word “target” when referring to community members).

Community stakeholders and academic researchers had extended discussions about how to classify who was on the research team (e.g., what happens when “researchers are the community and not ‘academic researchers’”) and about using the right language to be as inclusive as possible (e.g., using “community members/patients” vs. “patients, caregivers, partner organizations, etc.”; see Table 4 ). Community stakeholders and academic researchers also wanted stronger wording. An academic researcher suggested describing and highlighting what constitutes equity in engaged research, and one community stakeholder suggested a category that represented long-term relationships between community stakeholders and researchers to be the gold standard (i.e., partnership). In the third and fourth rounds, strong agreement existed, and few definitional modifications were developed (see Table 4 ).

Delphi panel’s changes in key terms in community engagement definitions, Rounds 2–5

Results from cognitive response interviews

The discussion and recommendations of the Delphi panel resulted in a final set of engagement strategies and definitions that were examined using cognitive response interviews of a purposive sample of 16 interviewees. The terms and definitions tested were the following:

• 1.Outreach and Education
• Definition: Research team members develop, implement, and evaluate strategies to reach the population of interest. Organizational partners can be engaged as advisors and can make key connections. In some instances, researchers are trying to educate community residents and/or patients about a particular topic. In these cases, outreach efforts are used to gain audiences for education sessions and/or materials.
• 2.Consultation
• Definition: Researchers ask community residents and/or patients for advice on important elements of a project or activity. The provided feedback informs the research, but the researchers are responsible for designing and implementing projects with no help expected from the people who were consulted.
• 3.Cooperation
• Definition: Researchers ask community residents and/or patients for advice and help with a project. Such help may include activity in defined aspects of the project, including recruitment, activities related to doing the intervention, the creation of study questions and measures, and the interpretation of outcomes. Researchers and community residents and/or patients work together to make decisions throughout the project.
• 4.Collaboration
• Definition: Patients, caregivers, clinicians, researchers, and/or community members partner in every aspect of the research, including setting priorities, study design, implementation, analysis/interpretation, and dissemination. Collaborations are built on mutual respect and trust. All partners are valued, benefit from the research, and share decision-making, power, and resources.
• 5.Partnership
• Definition: A strong, bidirectional relationship exists among patients, caregivers, clinicians, researchers, and community members (or a combination of these categories) regarding every aspect of the research, including setting priorities, study design, implementation, analysis/interpretation, and dissemination. The relationship is built on trust and mutual respect. All partners are valued, benefit from the research, and share decision-making, power, and resources. Strong partnership processes exist for how resources are shared, how decisions are made, and how ownership of the work is determined and maintained. Partnerships are the result of long-term relationships and have moved beyond working on a single project. Partners have a history of collaboration, having worked together previously.

Participants in the cognitive response interviews considered two strategies of community engagement at a time and the underlying rationale for both in order to distinguish their differences. Overall, 85% of cognitive response interviewees agreed on such distinctions. The most misunderstood difference was between the outreach and education level and the consultation level (37.5% misunderstanding). Participants seemed to confuse the strategies because they thought the outreach and education level was a higher form of community-engaged research than cooperation. Cognitive interview responses suggest that 37.5% of participants found strong similarities between cooperation and collaboration and that 50% of participants did so between collaboration and partnership. Despite the perceived similarities, most participants (87.5%) agreed on the distinctions. A key distinction that participants made between cooperation and collaboration was related to decision-making, control, or power. Involvement in decision-making, control, or power was an important feature of collaboration. A key distinction between collaboration and partnership was the number of projects researchers and community members had collaborated on. All of the eight participants who completed the collaboration/partnership comparison used the words long-term , ongoing , or history to describe the important features of partnership.

Over the rounds of review for the Delphi panel, the categorization of community members and researchers shifted toward more common vernacular (i.e., community residents and/or patients ) than research language (i.e., stakeholders ). Whereas the outreach and education category was initially defined using specific ideas such as “staff members who are similar to target population” or “people with relevant lived experience,” in the final definition, the category was defined in broad terms like “organizational partners” or “community residents and/or patients.” Definitions of strategies of engagement further along the continuum, such as collaboration, were described in broad terms (e.g., “the community”) at the beginning of the process but in specific groups (e.g., “patients, caregivers, clinicians, and community members”) by the end. Also regarding categories further along the continuum, such as collaboration and partnership, Delphi and interview participants desired that the terms reflect community members’ active involvement and decision-making influence in the research process. In these stages of engagement, researchers are not expected to merely make the attempt to have a respectful and equal relationship with community members; they are expected to actually have a respectful and equal relationship. Trust and a strong relationship should be in place to achieve a high level of engagement.

Participants seemed to believe that outreach and education is a more advanced level of community engagement than has been discussed in the historical literature, where it has been described as ranging from nonparticipation to the lowest level of tokenism [ 8 , 9 ]. Some participants negatively described consultation because it required the most work from them without guaranteeing anything in return. This deficit in giving was a major problem, and the idea that their efforts may not even influence the research project was an additional injury. In contrast, with outreach and education, participants receive something, and participants assumed that this stage naturally incorporated feedback, as respondents talked about community members being needed for outreach and actively engaging in education sessions.

Because cognitive response participants judged outreach and education as being an advanced stage of engagement, we looked back at comments from the Delphi panel when discussing outreach and education. In the first round of definition changes from the Delphi panel, one academic researcher commented that the definition for outreach and education seemed more involved than what the researchers had seen before. At the same time, two community members wanted the definition to involve community members more in outreach activities and producing appropriate educational materials. It was a difference in perception of outreach and education projects that continued to show up during cognitive interviews and participant surveys predominantly with community member participants. Explanations from the cognitive response interviews and comments on comparisons of category definitions and position within the continuum suggested the need to rethink the presentation of outreach and education in comparison to consultation.

The PCORI Compensation Framework states:

Research and other research-related activities funded by the Patient-Centered Outcomes Research Institute (PCORI) should reflect the time and contributions of all partners. Fair financial compensation demonstrates that patients, caregivers, and patient/caregiver organizations’ contributions to the research, including related commitments of time and effort, are valuable and valued. Compensation demonstrates recognition of the value, worth, fairness of treatment with others involved in the research project, and contributes to all members of the research team being valued as contributors to the research project [ 20 ].

Compensation was not discussed directly, but the principles selected and the discussion of these during cognitive interviews allude to the issues noted in the PCORI framework. The Delphi panel discussion and cognitive response interviews suggest an expectation that community resources and contributions be valued and compensated. These resources might include compensation for the use of organizational space, staff or community contributions to recruitment, data collection, or other research-related projects and activities, but might also include appropriate compensation of research participants. Hence, means for compensation may include financial, along with other kinds of intellectual and community investment.

It is possible that the standard single-axis approach to describing community-engaged research continua does not adequately depict community contributions and benefits for each engagement strategy. We developed the framework shown in Figure 2 as an alternative for consideration. This depiction seems to adequately capture community understanding of the contributions from researchers and benefits to communities regarding outreach and education compared to consultation.

Recommended portrayal of continuum of community-engaged research interactions.

Limitations

These findings should be interpreted cautiously due to the small sample size. However, cognitive response interviewing provides in-depth insight into how participants are thinking about and interpreting surveys, the factors that affect their interpretation and responses, and how comfortable they feel with the language, options, and coverage of topics important to an issue. In addition, the Delphi process allows a diverse group of stakeholders to consider issues of importance until agreement has been reached. The findings and recommendations presented require quantitative assessment and discussion in the literature.

CONCLUSIONS

The results of Delphi panel and cognitive response interviews indicate that it is possible to define a continuum of patient- and community-engaged research that is understood and accepted by both academic researchers and community members. However, responses from the cognitive response interviews suggest the need to revisit the understanding and depiction of the strategies that are to be used in measure development. Cognitive response data also indicate that terminology matters in the ability to adequately convey roles, participation, and benefits at each level of community engagement along the continuum.

This research was funded by the Patient Centered Outcome Research Institute (PCORI), ME-1511-33027. The funder had no role in the study design, data collection, analysis, interpretation, or drafting of this article.

Compliance with Ethical Standards

Conflict of Interest: The authors declare that they have no conflicts interests.

Authors’ Contributions: V.S.T. conceived of the study, participated in the design of the study, completed interviews, assisted with interview coding and analysis. In addition, V.S.T. wrote the draft version and revisions of the manuscript. N.A. participated in the study design, performed interviews, completed quantitative data analysis and assisted with manuscript revision. D.B. participated in the study design and revision of the manuscript. M.G. conceived of the study, directed the design and coordination of the study and helped to draft the manuscript. All authors read and approved the final version of the manuscript.

Ethical Approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The institutional review boards at Washington University in St. Louis and at New York University approved this study.

Informed Consent: Informed consent was obtained from all individual participants included in the study. The institutional review boards at Washington University in St. Louis and at New York University approved the consent procedures used in this study.

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11.2 Steps in Developing a Research Proposal

Learning objectives.

• Identify the steps in developing a research proposal.
• Choose a topic and formulate a research question and working thesis.
• Develop a research proposal.

Writing a good research paper takes time, thought, and effort. Although this assignment is challenging, it is manageable. Focusing on one step at a time will help you develop a thoughtful, informative, well-supported research paper.

Your first step is to choose a topic and then to develop research questions, a working thesis, and a written research proposal. Set aside adequate time for this part of the process. Fully exploring ideas will help you build a solid foundation for your paper.

Choosing a Topic

When you choose a topic for a research paper, you are making a major commitment. Your choice will help determine whether you enjoy the lengthy process of research and writing—and whether your final paper fulfills the assignment requirements. If you choose your topic hastily, you may later find it difficult to work with your topic. By taking your time and choosing carefully, you can ensure that this assignment is not only challenging but also rewarding.

Writers understand the importance of choosing a topic that fulfills the assignment requirements and fits the assignment’s purpose and audience. (For more information about purpose and audience, see Chapter 6 “Writing Paragraphs: Separating Ideas and Shaping Content” .) Choosing a topic that interests you is also crucial. You instructor may provide a list of suggested topics or ask that you develop a topic on your own. In either case, try to identify topics that genuinely interest you.

After identifying potential topic ideas, you will need to evaluate your ideas and choose one topic to pursue. Will you be able to find enough information about the topic? Can you develop a paper about this topic that presents and supports your original ideas? Is the topic too broad or too narrow for the scope of the assignment? If so, can you modify it so it is more manageable? You will ask these questions during this preliminary phase of the research process.

Identifying Potential Topics

Sometimes, your instructor may provide a list of suggested topics. If so, you may benefit from identifying several possibilities before committing to one idea. It is important to know how to narrow down your ideas into a concise, manageable thesis. You may also use the list as a starting point to help you identify additional, related topics. Discussing your ideas with your instructor will help ensure that you choose a manageable topic that fits the requirements of the assignment.

In this chapter, you will follow a writer named Jorge, who is studying health care administration, as he prepares a research paper. You will also plan, research, and draft your own research paper.

Jorge was assigned to write a research paper on health and the media for an introductory course in health care. Although a general topic was selected for the students, Jorge had to decide which specific issues interested him. He brainstormed a list of possibilities.

If you are writing a research paper for a specialized course, look back through your notes and course activities. Identify reading assignments and class discussions that especially engaged you. Doing so can help you identify topics to pursue.

• Health Maintenance Organizations (HMOs) in the news
• Sexual education programs
• Hollywood and eating disorders
• Americans’ access to public health information
• Media portrayal of health care reform bill
• Depictions of drugs on television
• The effect of the Internet on mental health
• Popularized diets (such as low-carbohydrate diets)
• Fear of pandemics (bird flu, HINI, SARS)
• Electronic entertainment and obesity
• Advertisements for prescription drugs
• Public education and disease prevention

Set a timer for five minutes. Use brainstorming or idea mapping to create a list of topics you would be interested in researching for a paper about the influence of the Internet on social networking. Do you closely follow the media coverage of a particular website, such as Twitter? Would you like to learn more about a certain industry, such as online dating? Which social networking sites do you and your friends use? List as many ideas related to this topic as you can.

Narrowing Your Topic

Once you have a list of potential topics, you will need to choose one as the focus of your essay. You will also need to narrow your topic. Most writers find that the topics they listed during brainstorming or idea mapping are broad—too broad for the scope of the assignment. Working with an overly broad topic, such as sexual education programs or popularized diets, can be frustrating and overwhelming. Each topic has so many facets that it would be impossible to cover them all in a college research paper. However, more specific choices, such as the pros and cons of sexual education in kids’ television programs or the physical effects of the South Beach diet, are specific enough to write about without being too narrow to sustain an entire research paper.

A good research paper provides focused, in-depth information and analysis. If your topic is too broad, you will find it difficult to do more than skim the surface when you research it and write about it. Narrowing your focus is essential to making your topic manageable. To narrow your focus, explore your topic in writing, conduct preliminary research, and discuss both the topic and the research with others.

Exploring Your Topic in Writing

“How am I supposed to narrow my topic when I haven’t even begun researching yet?” In fact, you may already know more than you realize. Review your list and identify your top two or three topics. Set aside some time to explore each one through freewriting. (For more information about freewriting, see Chapter 8 “The Writing Process: How Do I Begin?” .) Simply taking the time to focus on your topic may yield fresh angles.

Jorge knew that he was especially interested in the topic of diet fads, but he also knew that it was much too broad for his assignment. He used freewriting to explore his thoughts so he could narrow his topic. Read Jorge’s ideas.

Conducting Preliminary Research

Another way writers may focus a topic is to conduct preliminary research . Like freewriting, exploratory reading can help you identify interesting angles. Surfing the web and browsing through newspaper and magazine articles are good ways to start. Find out what people are saying about your topic on blogs and online discussion groups. Discussing your topic with others can also inspire you. Talk about your ideas with your classmates, your friends, or your instructor.

Jorge’s freewriting exercise helped him realize that the assigned topic of health and the media intersected with a few of his interests—diet, nutrition, and obesity. Preliminary online research and discussions with his classmates strengthened his impression that many people are confused or misled by media coverage of these subjects.

Jorge decided to focus his paper on a topic that had garnered a great deal of media attention—low-carbohydrate diets. He wanted to find out whether low-carbohydrate diets were as effective as their proponents claimed.

Writing at Work

At work, you may need to research a topic quickly to find general information. This information can be useful in understanding trends in a given industry or generating competition. For example, a company may research a competitor’s prices and use the information when pricing their own product. You may find it useful to skim a variety of reliable sources and take notes on your findings.

The reliability of online sources varies greatly. In this exploratory phase of your research, you do not need to evaluate sources as closely as you will later. However, use common sense as you refine your paper topic. If you read a fascinating blog comment that gives you a new idea for your paper, be sure to check out other, more reliable sources as well to make sure the idea is worth pursuing.

Review the list of topics you created in Note 11.18 “Exercise 1” and identify two or three topics you would like to explore further. For each of these topics, spend five to ten minutes writing about the topic without stopping. Then review your writing to identify possible areas of focus.

Set aside time to conduct preliminary research about your potential topics. Then choose a topic to pursue for your research paper.

Collaboration

Please share your topic list with a classmate. Select one or two topics on his or her list that you would like to learn more about and return it to him or her. Discuss why you found the topics interesting, and learn which of your topics your classmate selected and why.

A Plan for Research

Your freewriting and preliminary research have helped you choose a focused, manageable topic for your research paper. To work with your topic successfully, you will need to determine what exactly you want to learn about it—and later, what you want to say about it. Before you begin conducting in-depth research, you will further define your focus by developing a research question , a working thesis, and a research proposal.

Formulating a Research Question

In forming a research question, you are setting a goal for your research. Your main research question should be substantial enough to form the guiding principle of your paper—but focused enough to guide your research. A strong research question requires you not only to find information but also to put together different pieces of information, interpret and analyze them, and figure out what you think. As you consider potential research questions, ask yourself whether they would be too hard or too easy to answer.

To determine your research question, review the freewriting you completed earlier. Skim through books, articles, and websites and list the questions you have. (You may wish to use the 5WH strategy to help you formulate questions. See Chapter 8 “The Writing Process: How Do I Begin?” for more information about 5WH questions.) Include simple, factual questions and more complex questions that would require analysis and interpretation. Determine your main question—the primary focus of your paper—and several subquestions that you will need to research to answer your main question.

Here are the research questions Jorge will use to focus his research. Notice that his main research question has no obvious, straightforward answer. Jorge will need to research his subquestions, which address narrower topics, to answer his main question.

Using the topic you selected in Note 11.24 “Exercise 2” , write your main research question and at least four to five subquestions. Check that your main research question is appropriately complex for your assignment.

Constructing a Working ThesIs

A working thesis concisely states a writer’s initial answer to the main research question. It does not merely state a fact or present a subjective opinion. Instead, it expresses a debatable idea or claim that you hope to prove through additional research. Your working thesis is called a working thesis for a reason—it is subject to change. As you learn more about your topic, you may change your thinking in light of your research findings. Let your working thesis serve as a guide to your research, but do not be afraid to modify it based on what you learn.

Jorge began his research with a strong point of view based on his preliminary writing and research. Read his working thesis statement, which presents the point he will argue. Notice how it states Jorge’s tentative answer to his research question.

One way to determine your working thesis is to consider how you would complete sentences such as I believe or My opinion is . However, keep in mind that academic writing generally does not use first-person pronouns. These statements are useful starting points, but formal research papers use an objective voice.

Write a working thesis statement that presents your preliminary answer to the research question you wrote in Note 11.27 “Exercise 3” . Check that your working thesis statement presents an idea or claim that could be supported or refuted by evidence from research.

Creating a Research Proposal

A research proposal is a brief document—no more than one typed page—that summarizes the preliminary work you have completed. Your purpose in writing it is to formalize your plan for research and present it to your instructor for feedback. In your research proposal, you will present your main research question, related subquestions, and working thesis. You will also briefly discuss the value of researching this topic and indicate how you plan to gather information.

When Jorge began drafting his research proposal, he realized that he had already created most of the pieces he needed. However, he knew he also had to explain how his research would be relevant to other future health care professionals. In addition, he wanted to form a general plan for doing the research and identifying potentially useful sources. Read Jorge’s research proposal.

Before you begin a new project at work, you may have to develop a project summary document that states the purpose of the project, explains why it would be a wise use of company resources, and briefly outlines the steps involved in completing the project. This type of document is similar to a research proposal. Both documents define and limit a project, explain its value, discuss how to proceed, and identify what resources you will use.

Writing Your Own Research Proposal

Now you may write your own research proposal, if you have not done so already. Follow the guidelines provided in this lesson.

Key Takeaways

• Developing a research proposal involves the following preliminary steps: identifying potential ideas, choosing ideas to explore further, choosing and narrowing a topic, formulating a research question, and developing a working thesis.
• A good topic for a research paper interests the writer and fulfills the requirements of the assignment.
• Defining and narrowing a topic helps writers conduct focused, in-depth research.
• Writers conduct preliminary research to identify possible topics and research questions and to develop a working thesis.
• A good research question interests readers, is neither too broad nor too narrow, and has no obvious answer.
• A good working thesis expresses a debatable idea or claim that can be supported with evidence from research.
• Writers create a research proposal to present their topic, main research question, subquestions, and working thesis to an instructor for approval or feedback.

Writing for Success Copyright © 2015 by University of Minnesota is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , except where otherwise noted.

• 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

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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

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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 .

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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

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Alex M. McComber & Ann C. Macaulay

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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.

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Additional file

Additional file 1:.

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

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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

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Published : 12 April 2018

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

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RESEARCH PROPOSAL DRAFF ON THE ASSESSMENT OF THE ROLE OF COMMUNITY DEVELOPMENT PROGRAMMES ON YOUTH EMPOWERMENT IN THE NORTHERN UGANDA

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This article reflects on the potential of non-formal vocational education in Uganda to improve the quality of life of those excluded from formal education. Based on an exploration of humanizing development theorists Sen, Freire and Nyerere, together with two case studies, practical empowerment is described as a desirable outcome of education for development. Practical empowerment includes acquiring marketable skills as well as capabilities to critically give direction to one’s life. Although education leading to this outcome is desirable for all, non-formal vocational education can reach those currently excluded from formal education, thus enhancing their empowerment by equipping them with useful skills and knowledge.

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This study report highlights the challenges of re-integrating and rehabilitating formerly abducted girl child mothers in Northern Uganda with an emphasis on Kitgum Women Peace Initiative (KIWEPI). It was based on a case study design and utilised a quantitative and qualitative approach targeting a population of 57 respondents. The findings highlight experiences of formerly abducted girl child mothers including sexual violence, sexual harassment, unwanted pregnancy and children, stigmatisation, inability to access basic needs, including sexual and reproductive health complications. The findings affirm the key role that KIWEPI has played in rebuilding the lives of the girl mothers including provision of life skills training, counselling, provision of basic needs to the girls and their children, sensitisation of the communities, among others. The report further notes that KIWEPI still faces key challenges that includes lack of ample training equipment and human resource, inability to cope with the high levels of trauma amongst the girl mothers, lack of financial resources, etc. It also emphasises the need to have special funding programmes that target community based initiatives and are directly specifically to the needs of the intended beneficiaries.

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I realize you left the brushes uncovered for visualization purposes, but as I'm sure you know, they would have to be covered so as not to fling grime on passersby! Also, I couldn't help but notice the benches facing the tracks and thought I would paste this:   http://www.core77.com/posts/35103/Designing-a-Solution-to-Stop-Drunks-from-Falling-Off-of-Subway-Platforms  -  For consideration 

There are many Montreal stations that had a bright style to them when new.  Now, half the lights are continually burned out and spider webs seem to never be removed.  Let alone the inevitable filth of 100,000 people bumping in and out everyday.

Looks annoying to clean.

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Developing ash-free high-strength spherical carbon catalyst supports

• Domestic Catalysts
• Published: 28 June 2013
• Volume 5 , pages 156–163, ( 2013 )

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• V. V. Gur’yanov 1 ,
• V. M. Mukhin 1 &
• A. A. Kurilkin 1  

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The possibility of using furfurol for the production of ash-free high-strength active carbons with spheroidal particles as adsorbents and catalyst supports is substantiated. A single-stage process that incorporates the resinification of furfurol, the molding of a spherical product, and its hardening while allowing the process cycle time and the cost of equipment to be reduced is developed. Derivatographic, X-ray diffraction, mercury porometric, and adsorption studies of the carbonization of the molded spherical product are performed to characterize the development of the primary and porous structures of carbon residues. Ash-free active carbons with spheroidal particles, a full volume of sorbing micro- and mesopores (up to 1.50 cm 3 /g), and a uniquely high mechanical strength (its abrasion rate is three orders of magnitude lower than that of industrial active carbons) are obtained via the vapor-gas activation of a carbonized product. The obtained active carbons are superior to all known foreign and domestic analogues and are promising for the production of catalysts that operate under severe regimes, i.e., in moving and fluidized beds.

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OAO Elektrostal’ Research and Production Association Neorganika, Elektrostal’, Moscow oblast, 144001, Russia

V. V. Gur’yanov, V. M. Mukhin & A. A. Kurilkin

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Original Russian Text © V.V. Gur’yanov, V.M. Mukhin, A.A. Kurilkin, 2013, published in Kataliz v Promyshlennosti.

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Gur’yanov, V.V., Mukhin, V.M. & Kurilkin, A.A. Developing ash-free high-strength spherical carbon catalyst supports. Catal. Ind. 5 , 156–163 (2013). https://doi.org/10.1134/S2070050413020062

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Received : 08 December 2011

Published : 28 June 2013

Issue Date : April 2013

DOI : https://doi.org/10.1134/S2070050413020062

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