research on public health

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Public health articles from across Nature Portfolio

Public health is the medical discipline concerned with the prevention and control of disease through population surveillance and the promotion of healthy behaviours. Strategies used to promote public health include patient education, the administration of vaccines, and other components of preventive medicine.

Tackling heat-related mortality in aging populations

A large study of older adults in China points to physical and cognitive function — not age — as key predictors of heat-related mortality, highlighting the need for climate adaptation policies to prioritize accessibility across all age groups.

• Josiah L. Kephart
• Safiyyah M. Okoye

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Analysis of factors associated with depressive symptoms in stroke patients based on a national cross-sectional study.

• Wenhui Xiao
• Guanyang Zou

Evaluation of liver transplantation services in Kazakhstan from 2012 to 2023

• Yuliya Semenova
• Altynay Beyembetova

A pilot study on psychosocial factors and perceptions of organizational health among a sample of U.S. waste workers

• Aurora B. Le
• Abas Shkembi
• Richard L. Neitzel

The design and evaluation of gamified online role-play as a telehealth training strategy in dental education: an explanatory sequential mixed-methods study

• Chayanid Teerawongpairoj
• Chanita Tantipoj
• Kawin Sipiyaruk

Estimating the effects of temperature on transmission of the human malaria parasite, Plasmodium falciparum

Malaria transmission is affected by temperature but this relationship is not well characterised. Here, the authors experimentally determine the effect of temperature on parasite development in the mosquito and model how it impacts malaria transmission in Kenya under current and future climate scenarios.

• Isaac J. Stopard
• Matthew B. Thomas

Modeling health and well-being measures using ZIP code spatial neighborhood patterns

• Michael LaValley
• Shariq Mohammed

News and Comment

More work is needed to take on the rural wastewater challenge.

• Jinlou Huang
• Xiao Jin Yang

Any plan to make smoking obsolete is the right step

The United Kingdom is correct to attempt to end the single largest preventable cause of illness and death, as was New Zealand before its government changed its mind.

How ground glass might save crops from drought on a Caribbean island

In Grenada, public-health researcher Lindonne Telesford tests a soil additive made from recycled glass that could help farmers adapt to climate change.

• Kendall Powell

Post-election responsibilities for public health in the Democratic Republic of the Congo

• Faraan O. Rahim
• William C. Lieber
• Richard M. Lukelwa

A green-beauty collaboration

Dario Fornara, research director of the Davines Group–Rodale Institute European Regenerative Organic Center (EROC), talks to Nature Sustainability about the making of EROC and the benefits of an integrated partnership between the private and the non-profit sectors to advance sustainability.

• Monica Contestabile

Opportunities and challenges following approval of resmetirom for MASH liver disease

The US Food and Drug Administration (FDA) has approved the first drug, resmetirom, for metabolic dysfunction-associated steatohepatitis (MASH), but much work remains for the industry, practitioners and health systems so that this approval will benefit all patients.

• Jeffrey V. Lazarus
• Dana Ivancovsky Wajcman
• Paul N. Brennan

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The mediating role of depressive symptoms among Turkish population related to gender and low back pain: evidence from a national health survey

Low back pain (LBP), though non-life-threatening, burdens healthcare with treatment expenses and work hours lost. Globally, 70–84% experience it, with risk factors tied to societal structure, income, and livin...

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Relationship between self-reported hearing and vision problems, cognitive decline, depressive symptoms, and life satisfaction in older adults: a retrospective observational study

Sensory impairment in older adults is associated with cognitive decline, elevated depressive symptoms, and low levels of life satisfaction. However, these relationships are usually investigated separately and ...

Sex differences and dietary patterns in the association of air pollutants and hypertension

Hypertension is one of the major public health problems in China. Limited evidence exists regarding sex differences in the association between hypertension and air pollutants, as well as the impact of dietary ...

Life satisfaction and job and personal resources among public workers with non-standard work schedules

While the link between non-standard work schedules and poor health outcomes is established, few studies have examined how resources both in and outside of work can support the well-being of workers with non-st...

The Role of Chief Medical officers in making Public Health Overview Documents in Norwegian Municipalities. A qualitative Study

To investigate how Chief Medical Officers experience their role in the municipalities´ work with making the public health overview documents, demanded by the Norwegian Public Health Act from 2012.

Effect of arsenic on the risk of gestational diabetes mellitus: a systematic review and meta-analysis

Gestational diabetes mellitus (GDM) is a complication of pregnancy associated with numerous adverse outcomes. There may be a potential link between GDM and arsenic (As) exposure, but this hypothesis remains co...

Sociodemographic and environmental characteristics associated with thoughts of death and suicidal ideation in community-dwelling residents of a rural town in Japan: analyses from a perspective of accompanying problems

Suicide prevention has been focused on primary prevention as a group rather than individuals. However, we aimed to identify sociodemographic and environmental characteristics of individuals with suicidal thoug...

Enhancing pooling levels strengthens the risk resilience of healthcare insurance: a case study of basic medical insurance fund operations data in Gansu, China

In China, enhancing the pooling levels of basic health insurance has consistently been regarded as a pivotal measure to promote the refinement of the healthcare insurance system. From 2020 to 2022, the widespr...

Prevalence of metabolic syndrome and associated factors among patient with type 2 diabetes mellitus in Ethiopia, 2023: asystematic review and meta analysis

Metabolic syndrome is a complex pathophysiologic state which characterized by abdominal obesity, insulin resistance, hypertension, and hyperlipidaemia. The Adult Treatment Panel III report (ATP III) of the Nat...

The crossroads of work and home: linkages between smoke-free policies at work and household environments

Tobacco use causes over eight million global deaths annually, with seven million directly attributed to tobacco use and 1.2 million to second hand smoke (SHS). Smoke-free environments are crucial to counter SH...

The effect of obesity phenotype changes on cardiovascular outcomes in adults older than 40 years in the prospective cohort of the Tehran lipids and glucose study (TLGS): joint model of longitudinal and time-to-event data

Obesity is a worldwide health concern with serious clinical effects, including myocardial infarction (MI), stroke, cardiovascular diseases (CVDs), and all-cause mortality. The present study aimed to assess the...

Socioeconomic and cultural factors associated with pap smear screening among French women living in Réunion Island

Réunion Island is a French overseas territory located in the southern Indian Ocean, with a challenging socioeconomic and multicultural context. Compared to mainland France, Réunion has an overincidence and ove...

When one door closes: a qualitative exploration of women’s experiences of access to sexual and reproductive health services during the COVID-19 lockdown in Nigeria

COVID-19 pandemic widely disrupted health services provision, especially during the lockdown period, with females disproportionately affected. Very little is known about alternative healthcare sources used by ...

The regional disparities in liver disease comorbidity among elderly Chinese based on a health ecological model: the China Health and Retirement Longitudinal Study

This study aimed to investigate the risk factors for liver disease comorbidity among older adults in eastern, central, and western China, and explored binary, ternary and quaternary co-morbid co-causal pattern...

The workplace culture, mental health and wellbeing of early- and mid-career health academics: a cross-sectional analysis

There are reports of poor working conditions for early and mid-career academics (EMCAs) in universities, however, empirical data using validated tools are scarce. We conducted an online, cross-sectional survey...

Longitudinal association between the dynamic nature of depression with lower urinary tract symptoms suggestive of benign prostatic hyperplasia (LUTS/BPH)

Depression is associated with an increased risk of lower urinary tract symptoms suggestive of benign prostatic hyperplasia (LUTS/BPH). Whether the dynamic nature of depression affects the incidence of LUTS/BPH...

Realization path and connotation of the Healthy China strategy: macroscopic perspective of dietary structure and the entry of individual health consciousness

Dietary rationality and health concept have certain influence on individual health level. This study aims to explore the characteristics and existing problems of Chinese residents’ health behaviors from both m...

Validation of the arabic version of the EuroQol-5-dimension 5-level (EQ-5D-5 L) in patients with spinal degenerative diseases

This study aims to test the reliability and validity of the translated Arabic version of EQ-5D-5 L.

Using machine learning to develop a five-item short form of the children’s depression inventory

Many adolescents experience depression that often goes undetected and untreated. Identifying children and adolescents at a high risk of depression in a timely manner is an urgent concern. While the Children’s ...

Understanding the factors associated with COVID-19 vaccine hesitancy in Venezuela

Despite nearly a quarter of Venezuelans remaining unvaccinated against coronavirus disease 2019 (COVID-19), the factors contributing to vaccine hesitancy in the country have not been thoroughly investigated.

Association between area-level walkability and glycated haemoglobin: a Portuguese population-based study

Diabetes poses a substantial disease burden, prompting preventive interventions. Physical inactivity, a major risk factor for type 2 diabetes, can potentially be mitigated by enhancing area-level walkability. ...

Sexual harassment and implicit gender-career biases negatively impact women’s life expectancy in the US: a state-level analysis, 2011–2019

Despite some gains, women continue to have less access to work and poorer experiences in the workplace, relative to men. The purpose of this study was to examine the relationships among women’s life expectancy...

Publisher Correction: Association between the circulating very long-chain saturated fatty acid and cognitive function in older adults: findings from the NHANES

The original article was published in BMC Public Health 2024 24 :1061

Characterizing participants who respond to text, email, phone calls, or postcards in a SARS-CoV-2 prevalence study

Multiple modalities and frequencies of contact are needed to maximize recruitment in many public health surveys. The purpose of this analysis is to characterize respondents to a statewide SARS-CoV-2 testing st...

An evaluation of physical access barriers to COVID-19 vaccines uptake among persons with physical disabilities in western Kenya

Physically disabled persons continue to be discriminated, excluded and neglected based on design of structures and their location. This hampers equitable access to services and disproportionately affect them d...

I want to be safe: understanding the main drivers behind vaccination choice throughout the pandemic

Despite being a major advancement in modern medicine, vaccines face widespread hesitancy and refusal, posing challenges to immunization campaigns. The COVID-19 pandemic accentuated vaccine hesitancy, emphasizi...

The association between health literacy and pedestrian safety behavior among adults: a cross-sectional study

Pedestrians are considered the most vulnerable and complex road users as human behavior constitutes one of the fundamental reasons for traffic-related incidents involving pedestrians. However, the role of heal...

Factors associated with voluntary HIV counseling and testing among young students engaging in casual sexual activity: a cross-sectional study from Eastern China

To investigate the factors associated with voluntary HIV counseling and testing (VCT) among young students engaging in casual sexual activity and to establish a scientific rationale for developing targeted int...

EQ-5D-3L and EQ-5D-5L population norms for Thailand

The previous Thai norm-based scores for the EQ-5D-5L were established with Thai general population samples aged 20–70 years in 2019. Nevertheless, these values need to be updated after the COVID-19 pandemic be...

Evaluating knowledge, attitude, and physical activity levels related to cardiovascular disease in Egyptian adults with and without cardiovascular disease: a community-based cross-sectional study

Cardiovascular disease (CVD) represents a significant health challenge in Egypt, yet there exists limited understanding regarding the knowledge, attitudes, and physical activity levels associated with CVD. The...

Association of healthy eating index and self-rated health in adults living in Tehran: a cross-sectional study

Self-rated health (SRH) has been identified in many studies as a valid predictor of mortality and healthcare utilization. There is limited research on SRH and dietary intake. This study aimed to investigate th...

Sexual and reproductive health information needs; an inquiry from the lens of in-school adolescents in Ebonyi State, Southeast Nigeria

It is important to understand the sexual and reproductive health (SRH) needs of adolescents from the adolescents themselves to address their needs properly. Hence, this paper provides new knowledge on the info...

Acceptability of self-collected vaginal samples for human papillomavirus testing for primary cervical cancer screening: comparison of face-to-face and online recruitment modes

This study aimed to assess the acceptability and attitudes of women towards human papillomavirus (HPV) self-sampling and compare the effectiveness of two delivery modes utilising face-to-face and online websit...

Clusters of lifestyle behavioral risk factors and their associations with depressive symptoms and stress: evidence from students at a university in Finland

No previous research of university students in Finland assessed lifestyle behavioral risk factors (BRFs), grouped students into clusters, appraised the relationships of the clusters with their mental well-bein...

Prevalence, associated risk factors; and patient and economic impact of multiple sensory impairment in a multi-ethnic elderly population in Singapore: the PIONEER study

To determine the prevalence, risk factors; and impact on patient health and economic outcomes across the laterality spectrum of multiple sensory impairment (MSI) in a multi-ethnic older Asian population.

Implementation processes of social network interventions for physical activity and sedentary behavior among children and adolescents: a scoping review

The characteristics of the implementation process of interventions are essential for bridging the gap between research and practice. This scoping review aims to identify the implementation process of social ne...

Prevalence and influencing factors of anemia among pregnant women across first, second and third trimesters of pregnancy in monitoring areas, from 2016 to 2020: a population-based multi-center cohort study

To assess the prevalence of anemia among pregnant women across their entire pregnancy and the factors affecting it in the monitoring areas.

A new perspective on balancing life domains: work–nonwork balance crafting

Self-initiated and proactive changes in working conditions through crafting are essential for shaping work and improving work-related well-being. Recently, the research stream of job crafting has been extended...

School health promotion and fruit and vegetable consumption in secondary schools: a repeated cross-sectional multilevel study

Worldwide, recommendations for fruit and vegetable consumption are not met, which can cause chronic diseases. Especially adolescence is an important phase for the development of health behaviours. Therefore, i...

Diet and lifestyle behaviours simultaneously act on frailty: it is time to move the threshold of frailty prevention and control forward

To analyse the association among the simultaneous effects of dietary intake, daily life behavioural factors, and frailty outcomes in older Chinese women, we predicted the probability of maintaining physical ro...

Factors affecting safe pesticide-use behaviors among farm plant agriculturists in northeastern Thailand

Pesticide poisoning is a major public health problem in Thailand and is the result of intensive inappropriate and unsafe use of pesticides. This analytical cross-sectional study aimed to determine the factors ...

“It’s about how you take in things with your brain” - young people’s perspectives on mental health and help seeking: an interview study

Poor mental health in young people has become a growing problem globally over the past decades. However, young people have also been shown to underutilize available healthcare resources. The World Health Organ...

Racial and ethnic disparities in access to community-based perinatal mental health programs: results from a cross-sectional survey

Perinatal mental health is a major public health problem that disproportionately affects people from racial and ethnic minority groups. Community-based perinatal mental health programs, such as peer support gr...

Cervical cancer screening among women with comorbidities: evidence from the 2022 Tanzania demographic and health survey

The aim of this study is to examine cervical cancer screening (CCS) uptake among women living with hypertension and HIV in Tanzania.

Which aspects of education are health protective? a life course examination of early education and adulthood cardiometabolic health in the 30-year study of early child care and Youth Development (SECCYD)

Past research describes robust associations between education and health, yet findings have generally been limited to the examination of education as the number of years of education or educational attainment....

Trends in parkinson’s disease mortality in China from 2004 to 2021: a joinpoint analysis

This study aimed to analyze the trends of Parkinson’s disease (PD) mortality rates among Chinese residents from 2004 to 2021, provide evidence for the formulation of PD prevention and control strategies to imp...

Factors associated with the use of antibiotics for children presenting with illnesses with fever and cough obtained from prescription and non-prescription sources: a cross-sectional study of data for 37 sub-Saharan African countries

Fever and cough in under-five children are common and predominately self-limiting illnesses. Inappropriate prescribing of antibiotics in sub-Saharan Africa is a significant public health concern. However, pres...

A methodology for estimating SARS-CoV-2 importation risk by air travel into Canada between July and November 2021

Estimating rates of disease importation by travellers is a key activity to assess both the risk to a country from an infectious disease emerging elsewhere in the world and the effectiveness of border measures....

‘We get to learn as we move’: effects and feasibility of lesson-integrated physical activity in a Swedish primary school

Physical activity (PA) promotes health in adults as well as children. At the same time, a large proportion of children do not meet the recommendations for PA, and more school-based efforts to increase PA are n...

Retraction Note: Children’s physical activity level and sedentary behaviour in Norwegian early childhood education and care: effects of a staff-led cluster-randomised controlled trial

This article has been retracted. Please see the Retraction Notice for more detail: https://doi.org/10.1186/s12889-024-18629-0.

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Public health and research: an overview

Journal of Health Research

ISSN : 2586-940X

Article publication date: 15 October 2020

Issue publication date: 15 June 2021

This paper was to describe the overview of public health research.

Design/methodology/approach

It is a commentary piece of work from own long experience in working with the World Health Organization.

This study has innovative ideas in approaching priority areas in public health research.

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Plianbangchang, S. (2021), "Public health and research: an overview", Journal of Health Research , Vol. 35 No. 4, pp. 374-378. https://doi.org/10.1108/JHR-03-2020-0074

Emerald Publishing Limited

Copyright © 2020, Samlee Plianbangchang

Published in Journal of Health Research . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

An overview of public health

Public health is the science and art of preventing disease, prolonging life and promoting human health through organized community efforts as well as the informed choice of society, public, private and voluntary organizations and communities at large. Analyzing the health of a population and the threats to that health forms the basis for public health.

Additionally, “health”, as defined in the WHO Constitution in 1948 [ 1 ], considers physical, mental and social well-being and is not merely the absence of disease or infirmity. Furthermore, public health is interdisciplinary, thus, a “public health team” may include several related disciplines in health and other social fields. Access to public health initiatives for comprehensive and integrated health care and services is always a difficult challenge in any population setting.

The objective of this commentary is to provide an overview of public health research and highlight innovative thinking in the field.

Public health systems

Public health systems are commonly defined as “all public, private, and voluntary entities that contribute to the delivery of essential public health services to people within a jurisdiction” [ 2 ]. This concept is to ensure, among other things, that all contributions to the improved health and well-being of the community or state are appropriately recognized and counted in the assessment of the provision of public health services to the community. The public health system includes public health agencies at state and local levels; all healthcare providers; public safety agencies; human services and charity organizations; education and youth development agencies; recreation and art-related organizations; economic and philanthropic agencies and environmental organizations.

The 10 essential public health services/functions

Monitoring community health situations to identify and solve health problems and prevent any health risks in the community;

Investigating and diagnosing specific health threats and health hazards in the community with the view to their early prevention;

Through modern technology in communication, informing, educating and empowering people in the community about health issues and challenges and their interventions;

Identifying/investigating and solving any problems of public health importance;

Through the full participation of people, developing policies and plans that support individual and combined health efforts in the community;

Ensuring effective enforcement of laws and regulations that protect environmental health and assure the safety of the population;

Linking people to needed personal health services and ensuring the provision of quality health care when otherwise unavailable;

Assuring the availability of effective public health workforce and competent healthcare personnel in both public and private facilities;

Objectively evaluating efficiency, effectiveness, accessibility and quality of personal as well as population-based health care facilities and services and

Undertaking study/research for new insights and innovative solutions to effectively counter prevailing and emerging health problems.

Public health rsearch aims to elucidate the influence of factors that determine the health of a population, i.e. genetic, environmental, social-cultural, economic, political, etc. The objective of public health research is to use the knowledge gained to propose policies and interventions, based on scientific evidence, and to help improve the health and well-being of the population and ultimately reduce/eradicate health inequalities.

Public health research is characterized by its multidisciplinary approach. It draws on several disciplines in its development and management, especially epidemiology/human ecology; biostatistics; physical and social sciences as applied to health; biology; genetics and toxicology. It usually entails the analysis of data on population samples on varying scales, depending on the scope and purpose of the research [ 4 ].

In practical terms, public health researchers study the statuses of population health and well-being, disability and loss of independence. They analyze the determining risk factors of these statuses or conditions, whether biological, behavioral, psycho-social or environmental. In addition, the researchers develop and assess the interventions aiming to effectively promote population health, prevent disease and compensate for disabilities and loss of independence. They also develop and assess innovation to improve efficiency and effectiveness of the organization of healthcare facilities and personnel, in public health, medical and other social service areas.

Research in health may be in the fields of health research, medical research, public health research, health services research, health systems research, environmental health research and others. These are interlinked and need to be pursued in a parallel manner in public health development.

Funding agencies

Mission and role of funding agencies

(2)Quality of research proposal

Relevance to current health-related issues and problems; responding to priority public health needs and the challenges of community and country are crucial. Applications should also be in the interest of the international/global health community.

Formulation with rational and logical thinking; Research proposals should be well-conceived and developed according to sound research methodology/protocol on epidemiological principles.

Expected result of the proposal; The result must be of high quality and should imply strong feasibility in its subsequent application/implementation in both technical, managerial and financial terms.

Public health system development research

DEIDS (development and evaluation of integrated health delivery system) (Thailand Lampang Health Development Project), 1973-1978 [ 6 ].

(2)District Health Services Development Project based on the principle of the primary health care approach, Mongar Health Development Project in Bhutan, 1984–1990 [ 7 ].

(3)Comprehensive and Integrated Health Research Development Project on hill- tribe population, 2014–present (still ongoing)

This is a long-term large research and development project with many sub-projects focusing on various specific issues of the target population. It is a multi-agency and interdisciplinary endeavor developed and implemented through the coordination of the Maefah Luang University Center of Excellence on health of the hill-tribe population. It includes the development of integrated and comprehensive social and health care services with an emphasis on equity, social justice and self-reliance in the community. There are multiple sources of funding, however mainly from the National Research Council of Thailand.

Some suggested areas for contemporary public health research

Universal health coverage for all

Financial sustainability in the long term

Equal accessibility by all people, regardless of their social and economic status

The right approach to development, proactive or passive strategy

Affordability in financial and managerial terms of the country concerned.

(2)Social impact of drug abuse /addiction

The social and economic impact of (chaotic situations created by) drug abuse and addiction

The general health of a population that is gradually undermined by drug abuse and drug addiction, leading, among other things to worsened national social and economic growth.

(3)Health and social care of elderly population

Intervention to reduce the degree of morbidity/disability and dependence

Efforts to increase social and economic productivity/independence

Program for self-help and self-reliance in an aged population

Preference between aging and aged programs, the difference between the two.

(4)Emerging infectious disease (EID)

The epidemiological, environmental and ecological approach in an integrated manner

The importance of social and behavioral change

Emerging mutation, assortment and genetic change in infectious agents

Impact of global climate change on EID, etc.

Even though it is mainly conceptual, the article may be able to help open new visions in public health research for better and sustainable health in the entire population in various localities.

1 World Health Organization [WHO] . WHO basic document . 47th ed. Geneva : WHO ; 2009 [cited 2019 Nov 28]. Available from: https://apps.who.int/iris/handle/10665/44192 .

2 World Health Organization [WHO] . What is health policy and systems research (HPSR)? [cited 2019 Nov 28]. Available from: https://www.who.int/alliance-hpsr/about/hpsr/en/ .

3 Centers for Disease Control and Prevention [CDC] , Office for state, tribal, local and territorial support . The 10 Essential Public Health Services: An Overview [cited 2019 Nov 28]. Available from: https://www.cdc.gov/publichealthgateway/publichealthservices/pdf/essential-phs.pdf .

4 Centers for Disease Control and Prevention [CDC] . Public health 101 series [cited 2019 Nov 28]. Available from: https://www.cdc.gov/publichealth101/ .

5 Centers for Disease Control and Prevention [CDC] . 24/7 Saving Lives, Protecting People [cited 2019 Nov 28]. Available from: https://www.cdcfoundation.org/cdc-247-saving-lives-protecting-people# .

6 Memoir on Occasion of the Death Anniversary of Dr. Somboon Vacharothai . Bangkok ; 2014 : 39 - 43 . (On Thailand DEIDS Project) .

7 World Health Organization [WHO] , Regional office for south-east asia [SEARO]. Sasakawa health prize: stories from south-east asia . New Delhi : WHO/SEARO ; 2012 : 125 - 146 [cited 2019 Nov 28]. Available from: https://apps.who.int/iris/bitstream/handle/10665/205878/B4905.pdf?sequence=1&isAllowed=y .

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• Public Health Research
• Open Access
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Part of the book series: Public Health Ethics Analysis ((PHES,volume 3))

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Having a scientific basis for the practice of public health is critical. Research leads to insight and innovations that solve health problems and is therefore central to public health worldwide. For example, in the United States research is one of the ten essential public health services (Public Health Functions Steering Committee 1994). The s of the Ethical Practice of Public , developed by the Public Health Leadership Society (2002), emphasizes the value of having a scientific basis for action. Principle five specifically calls on public health to seek the information needed to carry out effective policies and programs that protect and promote health.

The opinions, findings, and conclusions of the authors do not necessarily reflect the official position, views, or policies of the editors, the editors’ host institutions, or the authors’ host institutions.

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Research Methods

Evidence-Based Decision-Making 8: Health Policy, a Primer for Researchers

How do we define the policy impact of public health research a systematic review.

Kristel Alla, Wayne D. Hall, … Carla S. Meurk

• Ethical Challenge
• Public Health Agency
• Public Health Practice
• Informal Payment

These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

1 Introduction

Having a scientific basis for the practice of public health is critical. Research leads to insight and innovations that solve health problems and is therefore central to public health worldwide. For example, in the United States research is one of the ten essential public health services (Public Health Functions Steering Committee 1994). The Principle s of the Ethical Practice of Public Health , developed by the Public Health Leadership Society (2002), emphasizes the value of having a scientific basis for action. Principle five specifically calls on public health to seek the information needed to carry out effective policies and programs that protect and promote health.

This chapter pres ents ethical issues that can arise when conducting public health research. Although the literature about research ethics is complex and rich, it has at least two important limitations when applied to public health research. The first is that much of research ethics has focused on clinical or biomedical research in which the primary interaction is between individuals (i.e., patient-physician or research participant-researcher). Since bioethics tends to focus on the individual, the field of research ethics often neglects broader issues pertaining to communities and population s, including ethical issues raised by some public health research methods (e.g., the use of cluster randomized trials to measure population, not just individual, effects). However, if our discussion of public health research ethics begins by examining public health activities, it becomes apparent that the process of gaining consent involves more than individuals. We must consider that communities bear risks and reap benefits; that not only individuals but also populations may be vulnerable; and that the social, political , and economic context in which research takes place poses ethical challenges. Public health research, with its focus on intervention at community and population levels, has brought these broader ethical considerations to researchers’ attention, demonstrating how ethics guidance based on biomedical research may limit, if not distort, the ethical perspective required to protect human subjects.

The second limitation has to do with how guideline s and regulations are conceived and used. As described in Chaps. 1 and 2 of this casebook, research ethics has mostly evolved out of concern for research abuses. Consequently, the intent of many guidelines and regulations is to strengthen the ethical practice of research with human subjects. These ethical guidance documents include the Nuremberg Code (1947); the Universal Declaration of Human Rights (United Nations 1948); the Declaration of Helsinki (World Medical Association 1964, last revised in 2013); and two documents developed by the Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO) : International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS 2002) and the International Ethical Guidelines for Epidemiological Studies (CIOMS 2009). In the United States, the primary ethical guidance for protecting human subjects is Title 45, Part 46, of the Code of Federal Regulations (U.S. Department of Health and Human Services 2009). The e thical principles of respect for persons , beneficence , and justice have oft en framed the discussion on ethical conduct of research with human subjects . These principle s were first articulated by the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979) in the Belmont Report and expanded upon by Beauchamp and Childress (1979) in Principles of Biomedical Ethics .

Such guidelines and regulations often represent a consensus on landmark issues and show ways to consider ethical issues. However, consensus documents can pose obstacles if used uncritically with overgeneralized rules applied blindly. For example, such documents seem to assume that the randomized controlled trial is the gold standard of research methodology, obscuring the fact that all research methods may raise ethical issues. In addition, it is debatable whether these guideline s adequately capture community- and population-oriented values and issues central to public health (Verweij and Dawson 2009). A general concern is that overreliance on guidance documents encourages a legalistic or compliance approach to ethics, rather than encouraging reflection and analysis (Coughlin et al. 2012). Coughlin and colleagues argue that to be successful, research oversight needs to focus on moral judgment and reflection, not on strict rule-like adherence to regulations documented on a checklist. Though formal training in ethics is desirable, moral judgment and discernment are developed by making ethical judgments. This highlights a problem inherent in research oversight. Review of research protocols requires scientific and ethical expertise. However, members of ethics review committees are often unpaid and uncompensated for service time and are frequently asked to perform review duties in addition to their normal work. This lack of regard for their service often results in considerable turnover among committee members and does not allow sufficient time for new members to develop moral discernment. Review of research protocols for human subjects should include consideration of the wider ethical implications of the research and not just focus on compliance with ethics regulations . When inappropriate, guidance should be adapted or even set aside.

Chapter 1 of this casebook provides an account of public health ethics that builds upon the disciplines of both ethics and public health. Following a similar approach, this chapter advances a view of public health research ethics that builds upon concepts of research ethics and public health research. As a result, many ethical issues discussed apply to all health research, including public health research. However, once we examine public health examples, we see that something beyond the traditional resources of current research regulations is needed. We will discuss these ethical issues by reflecting upon traditional research tenets and studying their limitations in a public health context. We will conclude by illustrating via the case studies included in this chapter how ethical challenges arise in public health research. It is impossible to closely analyze all possible ethical issues that may arise either in health research or public health research; thus our intent is to highlight some of the major ethical challenges and considerations.

2 What Is Different About Public Health Research?

The community and population perspective of public health, especially when addressing health issues in resource-poor contexts or in marginalized populations , frequently brings ethical challenges into focus. In public health, research typically occurs outside of the controlled environment that is characteristic of biomedical research . Instead, in public health, research often occurs in real world settings in a particular social, political , and economic context. It may involve interventions with whole communities or populations impacted by catastrophic public health emergencies .

2.1 Can Public Health Research Be Clearly Distinguished from Public Health Practice?

Distinguishing between public health practice and public health research is challenging. Many of the tools and methods are similar. Both involve systematic collection and analysis of data that may lead to generalizable knowledge . Public health research can take forms ranging from descriptive approaches (e.g., correlational studies and cross-sectional surveys) to analytic epidemiologic approaches (e.g., case control studies and cohort studies, including clinical trials ). These same approaches can characterize methods for collecting information as part of public health practice.

A common way to define research is on the basis of its goal to develop generalizable knowledge. For example, the International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS 2002) defines research as “… a class of activity designed to develop or contribute to generalizable knowledge. Generalizable knowledge consists of theories, principle s or relationships, or the accumulation of information on which they are based, that can be corroborated by accepted scientific methods of observation and inference.” Similarly, in the United States, research is defined as “…a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge ” (U.S. Department of Health and Human Services 2009).

In jurisdictions with legal requirements governing research activities, such as the United States, determining what is and is not research becomes critical. Sometimes, however, the line between research and practice-related activities is blurry. One way to identify if an activity is research is to look at intent. The primary intent of public health research is to yield generalizable knowledge. Key characteristics of public health research include (1) benefits beyond the needs of the study participants, (2) collection of data exceeding what is needed to care for study participants, and (3) generation of knowledge with relevance outside the population from which data were collected. In contrast, the primary intent of activities that constitute public health practice are to “… prevent or control disease or injury and improve health, or to improve a public health program or service …” (Centers for Disease Control and Prevention [CDC] 1999, 2010). Key characteristics of public health practice include (1) benefits that focus on activity participants, (2) collection of data needed to improve the activity or the health of the participants, and (3) generation of knowledge that does not go beyond the scope of the activity (CDC 1999, 2010).

Some researchers suggest that the difficulty in distinguishing public health research from public health practice emerges from a deeper conceptual issue relating to the impossibility of satisfactorily defining “research” and related categories (Fairchild and Bayer 2004). For example, public health surveillance might involve identical interventions and risks for public health research as for practice. This has led many public health professional s to call for reorienting ethical review around an activity’s level of risk, which applies to activities in both public health research and practice (Willison et al. 2014). Jurisdictions that do not yet have legal structures or have more flexibility to govern research activities than the United States might have an advantage. Whereas other jurisdictions might need to modify their approach to correlate ethical review with risk instead of on whether something falls under a slippery concept such as research.

3 Ethical Considerations for Protecting the Public during Health Research

This section outlines core aspects of research ethics and not only explains their relevance to public health, but also delves into why research ethics principles might need to be applied differently to public health research than to biomedical research .

3.1 Informed Consent

Informed consent is often treated as the primary means of protecting research participants. Although informed consent can be defined in different ways, it is foremost an active agreement made by someone with the capacity to understand, on the basis of relevant information , and in the absence of pressure or coercion. The common ethical justification for seeking informed consent is an appeal to the notion of autonomy , which holds that individuals have values and preferences and thus should voluntarily decide whether to participate in research. However, gaining consent can result from a more direct appeal to beneficence or to general welfare. Many research ethics guideline s and regulations require an interactive process between the investigator and research participant to best provide information and ensure comprehens ion.

Some potential research participants will always lack capacity to look after their own interests (e.g., children , people with dementia, the unconscious) and thus cannot provide consent. To protect people with diminished autonomy , informed consent is usually obtained from a parent , guardian, or legal representative. While it is clear that research participants with diminished capacity need extra protection, empirical evidence shows that even research participants with full cognitive capacity may not understand information presented as part of the consent process (Dawson 2009). For this reason, informed consent cannot be the only mechanism for protecting research participants. For instance, a research ethics committee can protect participants by assessing risks and benefits. Requiring approval by a research ethics com mittee might be considered a paternalistic judgment, but not an obviously wrong one (Garrard and Dawson 2005; Miller and Wertheimer 2007). Research ethics committees routinely consider waiving informed consent. This is true in public health research where the risk can be less than in biomedical research . Reliance on the judgments of research ethics committees presupposes that members have a high level of profession al trustworthiness and have the skills for ethical deliberation and analysis.

Cultural or social influences can challenge the ideal model of informed consent when conducting public health research. Marshall (2007) provides an excellent overview of challenges with obtaining informed consent, especially in resource-poor settings. These challenges include cultural and social factors that affect comprehension, communication of risks, and decisional authority for consent to do research. Language barriers and low literacy, mistaken beliefs about the benefits of participation , especially when access to health care is limited, and the need to communicate complex scientific information may reduce comprehension of study procedures, benefits, and risks. Marshall (2007) emphasizes the importance of engaging community leaders and soliciting and considering the opinions of community residents when identifying project goals and procedures and establishing consent processes. She notes that in many communities, relying solely on individual consent may not be culturally appropriate. In these situations, adding family or community consent is fitting.

Some research cannot be conducted if the standards of autonomous informed consent are always applied. A good example is emergency research when unconscious victims of head trauma may be randomized to different promising treatments, but the relative effectiveness of each treatment option is unknown. Some countries allow such research via waivers of informed consent if relevant conditions are met (e.g., minimal risk , and the research could not otherwise be carried out) (U.S. Department of Health and Human Services 2009). A public health research method for which it sometimes may be appropriate not to seek informed consent is the cluster randomized trial . By design, a cluster randomized trial compares interventions that target a group (i.e., social entity such as village or town, or a population). Various characteristics of these clusters are matched to ensure a robust comparison of interventions (including no intervention). In some cluster trials, obtaining individual informed consent can seem prohibitively expensive, damaging to a chieving study goals, or even impossible to attain (Sim and Dawson 2012; McRae et al. 2011b). Where consent is impossible to attain, is it right to require it at the expense of not doing the research? Attempts have been made to justify research without first attaining individual consent by appealing to an ethics committee for review, soliciting viewpoints from the community about whether the research is acceptable, or even seeking some form of community consent.

Dickert and Sugarman (2005) make a distinction between community consent and community consultation. Consent means seeking approval , whereas consultation means seeking ideas and opinions . They note, however, that this distinction gets blurred in practice, and that community consultation should not be approached as a box to check off without scrutinizing the input. They identify four ethical goals for any community consultation: enhanced protection, enhanced benefits, legitimacy, and shared responsibility. Adherence to these goals may ensure that risks are identified and protections put into place; that the research benefits not only the researchers, but also the participants and communities being studied; and that the legitimacy of the findings is increased. However, this does not constitute a direct parallel to the individual model of informed consent described previously. Community consent involves meeting with legitimate community representatives empowered to permit researchers to conduct studies involving community members (Weijer and Emanuel 2000; Dickert and Sugarman 2005). The involvement of community representatives in public health research is most clearly seen in community-based participatory research (CBPR) . In CBPR, authorities are involved at all levels of research—from initiation of ideas and projects through data collection, analysis and interpretation, and use of research findings to prompt community change (Flicker et al. 2007).

3.2 Risk/Benefit Analysis

A central concern for research ethics is the weighing of expected benefits against possible harms. The commonly employed criteria for assessing risk to human subjects who participate in health research are that risks are minimized and reasonable in relation to the anticipated benefits. For example, one can argue that procedures used in research are justifiable when already being used for diagnosis or treatment and the risks are proportional to the importance of the knowledge reasonably expected to result from the research. However, one problem in such a determination is the uncertainty of all judgments about risks and benefits. Such determinations have to be made carefully and fairly and on the basis of the best possible evidence.

Research participants may encounter several types of risks. One obvious risk is physical harm, which may include discomfort, pain, or injury from interventions such as drug regimens or medical procedures. Another risk is psychological harm. Research participants may experience stress, anxiety , embarrassment, depression, or other negative emotions. These emotions, which can occur during or after participation in the research, are common in research involving sensitive topics such as sexual preferences or behavior. Social and economic harms are another type of risk. Participants in research that focuses on mental illness, illegal activities, and even certain diseases such as HIV may risk being labeled or stigmatized if precautions are not taken to provide adequate privacy and confidentially. A person’s economic status may be affected if cost s are incurred for participating (e.g., transportation expenses to and from the study site) or by loss of employment (present or future) if a breach of confidentiality occurs (e.g., an employer discovers an employee is being treated for substance abuse ).

One common problem—about which ethics guidelines are typically silent—is how we should conceptualize study participants (McRae et al. 2011a). Consider, for example, that cluster randomized designs and cohort studies commonly compare a group receiving active intervention with a parallel group receiving no intervention. Does the term “participant” apply to those receiving no intervention? This question has far-reaching consequences. If people who do not receive intervention count as participants, researchers may have obligations to them that otherwise would not exist. Another way to think about this is to identify who might be at increased risk, rather than who is a participant. For example, the U.S. National Bioethics Advisory Commission (NBAC) recommends that whenever researchers anticipate that risks will extend beyond study participants, researchers should try to minimize risks to nonpartic ipants (NBAC 2001).

The benefits of health research are any favorable or positive outcome received as a direct result of the research. Put simply, without the research, the outcome would not exist. Sometimes the benefits of health research extend beyond study participants to society; other times, however, research participants do not benefit. And in other instances, only a few participants might benefit. Researchers should thoroughly consider what to do in all these scenarios and how benefits could be provided to those in need. Sometimes research involves reimbursement, incentives, or other tangible goods. Although such items may be provided when someone agrees to participate in research, these items should not be considered benefits arising from the research procedures. In some contexts, such as prisons, offering anything in return for participation in research may be viewed as pressure to participate and therefore should be carefully considered.

The risks of research must be reasonable when compared to the anticipated benefits. This can be difficult to assess because risks will vary depending on the study population . For example, research procedures considered safe for healthy adults may be risky for adults with compromised health or for vulnerable populations such as children , pregnant woman, or seniors. Even if the potential benefits are the same, if the risks differ, the risk/benefit balance is affected. Another consideration for evaluating risks and benefits is the expected result of the research. A higher level of risk may be acceptable if the research can reasonably be expected to benefit the participants. If there is no expectation that the research participants will benefit, the same level of risk may be unacceptable.

Foreseeing the benefits and harms in a study can be challenging. Striking a balance between the two can be difficult and, at times, controversial. A good example of this is the discussion generated by a series of studies conducted in Baltimore that assessed different methods for reducing the exposure of children to lead paint in older rented properties (Mastroianni and Kahn 2002). In this case, the fact was already known that exposure of children to lead is dangerous. However, due to the high cost of removing lead-based paint (the known, best solution), the researchers assessed the effectiveness of cheaper, partial methods of abatement for reducing or even removing the risk of exposure. If found to be effective, these alternative methods would allow treatment of more homes at the same cost, potentially benefiting more children. Monitoring during the study found that some children in the alternative abatement options had elevated blood lead levels. Some health officials believe that the research should not have gone ahead because of this likelihood. Others think that the research was justified because the children were not exposed to any greater level of lead, and in most cases, significantly less than if the research had not been conducted. In other words, no child was put at greater risk through participation , and all children be nefited from blood monitoring. This study demonstrates the complexities of evaluating risks and benefits in public health research.

3.3 Protection of Vulnerable Populations

Altho ugh all segments of society should have the opportunity to participate in research, vulnerable populations may need additional protections to prevent coercion or exploitation. The definition of what it is to be vulnerable is contested (Chap. 7 ). However, NBAC (2001) defines vulnerability in the context of research as a condition, either intrinsic (e.g., mental illness) or situational (e.g., incarceration ), that increases some participants’ risk of being harmed. Regardless of how we define vulnerability, it is often interpreted to require special protections for the safety and well-being of population s such as children, prisoners, pregnant women, mentally disabled people, and economically or educationally disadvantaged people. The CIOMS (2002) international guideline s suggest that special justification is required for inviting vulnerable people to serve as research subjects and, if they are selected, the means of protecting their rights and welfare must be strictly applied. The history of research is replete with examples of unethical treatment of vulnerable populations (Chap. 2 ).

Despite such worries about protecting vulnerable populations, a strong To exclude vulnerable populations violates the spirit of the principle of justice , which requires fair distribution of risks and benefits of research. Inclusion of vulnerable populations may require accommodations to address the specific nature of the vulnerability; however, once these accommodations are in place, vulnerable people with the cognitive capacity to provide informed consent should exercise autonomous choice about their participation . For example, it seems arbitrary to exclude pregnant women from research as a matter of course rather than making a decision based on an assessment of risk levels, the ability to control risks , and the likelihood of direct benefit to the participant .

3.4 Returning Research Results

Public health research tends to focus on population-level research questions. In some cases, for example where data have been anonymized, even when an issue relevant to the clinical care of one or more individuals in the data set is discovered, there is nothing that can be done about it. However, in other cases, public health data sets or surveillance data might hold information that could be crucial to the care of individuals.

When and how should individual-level data, including incidental and secondary findings , be communicated to research participants? The primary argument for an ethical imperative to offer participants research findings, both summary and individual results, rests on the principle of respect for persons ; however, the principles of beneficence and justice are also frequently cited (Presidential Commission for the Study of Bioethical Issues 2013; Miller et al. 2008; Fernandez et al. 2003). The word “offer” is important because giving people the right to decline results is also an expression of respect for persons. The ethical justification for a “duty to disclose research results,” especially individual-level data, has been challenged due to the potential harms of disclosure (Miller et al. 2008). Miller and colleagues argue that the lack of consistent policy guidance for disclosures and the ambiguity about what to disclose undermines any generalized ethical duty to disclose. Clearly, before making a decision to return results, especially individual-level data, the potential benefits and harms from disclosure must be carefully assessed.

The research consent process should describe plans for returning results or provide an option for not receiving results. The consent process should explain the potential harms and benefits associated with receiving research results, the possible strengths and limitations of the results, and the options for follow-up and support if unanticipated consequences occur. If a decision is made to return results, careful considerations must be given to how the results will be returned (e.g., in person, over the telephone, through a letter), whether opt-in or opt-out procedures will be used, and when the results should be returned. Fernandez and colleagues (2003) argue that “research results should, in general, be delayed until the results are published or until they have undergone peer review and been accepted for publication.” This recommendation is based on the need to ensure the integrity of the interpretation of the data and to prevent disclosure of inaccurate information .

To illustrate the diversity of opinion about sharing research data, some researchers have taken the obligation for disclosure further by advocating that research participants be granted access to their raw data via a data repository before these data are analyzed (Lunshof et al. 2014). Lunshof and colleagues suggest that access to raw personal data would increase transparency, personal choice, and reciprocity. Further, such access could equalize the relationship between those who donate data and those who use data for research. However, this rather utopian view raises issues with potential breaches of confidentiality, so more discussion is needed. More discussion is also needed about participants increasingly sharing information about research studies through social media, which can result in breaches of confidentiality and further challenge the integrity of research (Lipset 2014).

3.5 Conflicts of Interest

The potential for conflicts of interest occurs when an individual or group has multiple interests, one of which can compromise the integrity or impartiality of the other. Research involving human subjects often creates this potential when researchers are also involved with participants in the role of health care providers or through engagement with communities in the context of public health research. In resource-poor contexts, the economic impact of the research enterprise can be of such magnitude that it has sociopolitical ramifications o r complexities with potential to spur conflicts of interest. Discussion about conflicts of interest raises issues about integrity in public health and even the very concept of public health as an activity (Coughlin et al. 2012).

Shrinking budgets for public health activities have led many health departments, even those in resource-rich countries, to explore alternative approaches to financing public health research, leading to questions about what constitutes an appropriate partnership and to concerns about real or perceived conflicts of interest. For example, should government s collaborate with vaccine manufacturers to research potential adverse effects of a vaccine? Should researchers collaborate with soda manufactures to study the association between sugar-sweetened beverages and obesity? The U.S. Institute of Medicine (IOM) Committee on Conflicts of Interest in Medical Research, Education, and Practice defines conflict of interest as “a relationship that may place primary interests (e.g., public well-being or research integrity) at risk of being improperly influenced by the secondary, personal interests of the relationship (e.g., financial, professional, or intellectual gains)” (IOM 2009). When Bes-Rastrollo and colleagues (2013) studied systematic reviews of the association between sugar-sweetened beverages and weight gain, they found instances where conflicts of interest influenced scientific findings. The systematic reviews that identified sponsorship or conflicts of interest with food or beverage companies were five times more likely to report “no positive association” between consumption of sugar-sweetened beverages and weight gain or obesity than the reviews that reported having no industry sponsorship or conflicts of interest. These findings point to the need for guidance on how to identify and avoid conflicts of interest with potential to influence outcomes of public health research, especially when the research shapes public policy (IOM 2014).

3.6 Conducting Research during Public Health Emergencies

Sometimes the t raditional elements of research ethics are inappropriate frameworks for decision making. Let’s consider, for example, a decision being contemplated to conduct research during a public health emergency. The research is deemed vitally important to analyze what happened during the emergency, to plan for future scenarios, and to prevent death and illness during disasters. However, such research raises concerns, including the appearance that health officials are more interested in expanding knowledge than in responding to the disaster and that researchers are insensitive to more urgent needs of affected individuals. Still, the case can be made for a strong, ethical imperative that obligates public health officials to conduct research that could yield data useful in preventing future death and illness during disasters (London 2016). The chief ethical task for conducting research during a disaster is to secure future benefits for people without sacrificing the rights or interests of research subjects (Jennings and Arras 2008; WHO 2015). So to justify research during a disaster, public health officials must first demonstrate a real need for the research, which includes its social and scientific value (anticipated results). Generally speaking, research that can be conducted in a nonemergency setting should not be conducted during an emergency response .

If the decision is made to conduct research during a public health emergency, some unique ethical concerns must be considered: the research should not detract resources and personnel from emergency response activities; research activities should be prioritized by highest social and scientific value; and, as people in an emergency are often affected physically and psychologically, and sometimes traumatized, they should be considered a vulnerable population (Jennings and Arras 2008; WHO 2015). At the very least during an emergency, keep in mind that some people may not be able to make reasoned, informed decisions to participate in the research. Consequently, adequate means of protection for participants must be in place. The procedures for an ethics committee review may need to be modified for disaster research projects (Lurie et al. 2013). Possible approaches for ensuring appropriate review include developing just-in-case protocols and establishing centralized or specialized ethics review committees that can approve disaster research protocols quickly (Médecins Sans Frontières 2013).

4 How Ethical Challenges Can Arise in Public Health Research: Lessons Learned from Cases

The cases presented in this chapter illustrate some of the ethical challenges raised by public health research. These challenges range from compliance with research ethics guideline s to the need to address the economic and political implications from the wider societal context in which public health research occurs. Social, economic, and political factors can directly lead to ethical challenges or may affect a researcher’s ability to comply with ethical guidelines.

The case by Boulanger and Hunt illustrates how well-intentioned international efforts to improve access to health care in resource-poor countries can have unintended consequences that present ethical complications. The case raises various interconnected issues that have to do with researchers’ responsibilities and obligations and with conflicts between individual and public goods. Within a collaborative international public health research project, such conflicts can easily arise when local investigators find themselves serving multiple roles that create potential conflicts of interest . Boulanger and Hunt provide an excellent summary of the responsibilitie s and obligations of researchers, including to

Protect participants from harm and ensure they benefit from the research whenever possible;

Support and protect research staff, especially students ;

Support and respect research collaborators, building local capacity when possible; and

Support the research enterprise, which includes building public trust , maximizing the relevance and usefulness of the research, and disseminating findings.

Central to this case is a local researcher’s uncovering of how informal fees for obstetric care are being diverted to senior hospital administrators. The local researcher has a dilemma . If he reveals this ethically dubious informal fee structure, he will not only jeopardize his standing at the hospital, but he could also undermine the availability of obstetric care to women in his community. The director of the research program must ethically weigh the research goal of improving access to health care services with supporting the interests of the research staff while also maintaining good relations with local health agencies. In many contexts, this case would be a clear-cut whistleblower issue demanding revelation. However, where informal fees are standard practice, part of the political culture, or the health infrastructure is already fragile or minimal, the issue becomes complicated, forcing one to prioritize competing values and moral considerations.

The case by Makhoul and colleagues involves research on mental health concerns among youth in a Palestinian refugee camp . The case highlights cultural and social factors that may influence the consent process, especially the power dynamics within communities. Beyond addressing central bioethical and medical principles of trust and respect for persons , the case points to the need for considering broad public health concepts such as respect for community values, empowerment , and advocacy . This case also illustrates how researchers are almost always drawn into a community’s political dynamics by the economic influence of research in resource-poor settings. Efforts by community members to avoid alienating groups that contribute resources to the community may act as a subtle form of pressure to participate in the research.

The case by Kasule and colleagues illustrates the difficult practical choices that resource-poor countries face in processing the increasingly complex volume of research to be ethically reviewed. In these countries, public health officials struggle to complete basic administrative and regulatory aspects of research review and oversight, let alone provide conditions for careful, conscientious ethical analysis. This scenario questions the adequacy of training for members of ethics review committees . Failure to adequately train committee members and fund research oversight will result in lost opportunities and revenues, setting back a resource-poor country’s research or health infrastructure for years. But funding an organization to develop research oversight may divert funds from other more urgent public health needs. Trading short-term public health solutions for long-term research funding presents a classic case of resource allocation and prioritization. Kasule and colleagues consider the pros and cons of reliance upon outside ethics review committees, which might save money at the expense of having less control of oversight.

The case by Kanekar describes the use of an Internet-delivered safe sex health promotion intervention for young black men who have sex w ith men. This case raises a number of practical and ethical considerations and questions that arise in public health research. How does one differentiate research from public health practice? What approaches are required to serve vulnerable populations ? How can one use innovative techniques to target hard-to-reach populations? What are the best ways to protect the privacy of participants and ensure confidentiality of data? How can one reconcile or accommodate conflict among research partners who perceive their primary role or function in radically different ways (e.g., medical provider versus epidemiologist)?

5 Conclusions

Many ethical issues can arise in public health research. The social, economic, and political context within which the research enterprise functions further complicates the ethical landscape. Traditional approaches for considering research ethics issues emerged from biomedical research and initially emphasized ethical considerations at an individual level. However, research in public health demonstrates why this traditional approach to ethics should be expanded. A public health approach to research ethics is apt because it considers community values, the interdependence of citizens, social or population benefit , and social justice . However, as explained in Chap. 1, there is more to ensuring ethical conduct and scientific integrity in public health research than having an ethical review committee apply rule-based guidelines . Researchers need to be familiar with the ethical considerations unique to public health and have sufficient training and experience to exercise moral judgment in all phases of research.

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6 Case 1: To Reveal or Not to Reveal Potentially Harmful Findings: A Dilemma for Public Health Research

• Renaud F. Boulanger BA &
• Matthew R. Hunt PT, PhD 

Biomedical Ethics Unit, McGill University, Montréal, QC, Canada

Renaud F. Boulanger BA

School of Physical and Occupational Therapy, McGill University, Montréal, QC, Canada

Matthew R. Hunt PT, PhD

Centre for Interdisciplinary Research on Rehabilitation, Montréal, QC, Canada

This case is presented for instructional purposes only. The ideas and opinions expressed are the authors ’ own. The case is not meant to reflect the official position , views , or policies of the editors , the editors ’ host institutions , or the authors ’ host institutions .

6.1 Background

In 1987, African health ministers met in Mali to address access to quality primary health care, particularly in rural areas (Anonymous 1988). The resulting Bamako Initiative promoted universal accessibility, though it drew some early criticism for its support of user fees (McPake et al. 1993). For the next decade, user fees were implemented in many African countries to finance health care services. The World Bank supported the measure as part of its Structural Adjustments Programs, which also included austerity measures, trade liberalization, and privatization (McIntyre et al. 2006). However, user fees have since been shown to create access barriers that tend to affect the poor disproportionately (Macha et al. 2012), suggestin g that many vulnerable individuals have been prevented from accessing needed health care services. Against this backdrop, mounting international pressure led to the reform of many user-fees programs, particularly in the last decade. One primary strategy for increasing health care access has been the introduction of selective exemptions of user fees for specific groups (Ben Ameur et al. 2012; Meessen et al. 2011; Ridde et al. 2012). Although this strategy was originally planned in the Bamako Initiative , it was not uniformly implemented. Given the scale of the changes that user fees removal implies for health care systems, there is ongoing research to evaluate their impact (Lagarde and Palmer 2011). Health system investigations such as these may raise ethical questions (Hyder et al. 2014), especially since they involve the study of a public health intervention , often focus on individuals in extreme poverty, and tend to be international and collaborative in nature.

Collaborative international public health research offers the opportunity to build local capacity (Mayhew et al. 2008). However, such research raises a number of issues about researchers’ obligations and responsibilities . First is the responsibility to protect research participants from harm, an obligation recognized by all research ethics guidelines. This duty of protection is heightened when the research participants are from vulnerable populations (Hurst 2008), especially when they are recruited from extremely impoverished populations. Researchers’ responsibilities toward research participants also include ensuring that they benefit from the results of the research whenever possible. For example, the International Ethical Guidelines for Biomedical Research Involving Human Subjects directs that “any intervention or product developed, or knowledge generated, will be made reasonably available for the benefit of that population or community” (Council for International Organizations of Medical Sciences 2002, guideline 10). A second researcher responsibility is to support students and staff hired as part of the research project and to protect them from harm (Wilson 1992). This responsibility can be thought of both as the duty of an employer and the fiduciary duty of an academic supervisor and must extend to situations of whistleblowing. Third, researchers involved in collaborative research have a responsibility to colleagues and collaborators, especially given that research may play a crucial role in capacity building (Garcia and Curioso 2008). Although partnerships with local researchers have been touted as highly valuable (Costello and Zumla 2000), these ties may also result in unexpected ethical dilemmas for local researchers if conflicts arise between their research activities and their established local obligations and responsibilities (Richman et al. 2012). A fourth responsibility of researchers is dedication to the research enterprise. The conduct of public health research can have significant implications for the well-being of large segments of the population, but it requires the trust of the public and of relevant authorities. Endangering the relationship of trust in the context of one specific public health study may jeopardize or ruin other research initiatives (Corbie-Smith et al. 1999). Finally, a fifth responsibility of publicly funded researchers is their duty to the public in whose name they conduct research. Good stewardship requires that researchers strive to maximize the relevance and usefulness of their efforts and that they disseminate their findings (Arzberger et al. 2004). Researchers conducting collaborative international public health research may encounter ethically challenging conflicts among these five lines of responsibilit ies.

6.2 Case Description

Dr. Milena A. is the principal investigator of a large research program that is examining approaches for decreasing inequities in access to health care services in a low-resource setting. She works for an American university, and her research is funded by a U.S. agency. One member of her research team, Dr. Timothy N., is a local physician studying toward a public health degree at Milena’s institution. He is back in his country after finishing his coursework and is ready to conduct fieldwork research. Timothy has taken leave from his position at a local hospital to pursue his studies and, although he wants to continue his clinical work at the hospital, he also wants to expand his focus to include population-level health issues and, eventually, work with his country’s ministry of health. His studies are co-funded by Milena’s research grant and by the ministry of health.

Timothy’s research consists of an examination of the impact of his country’s recent abolishment of health care user fees for children younger than 5 years. User fees had been implemented uniformly in the 1990s without special consideration for poorer families with young children. Initial indicators suggest that health care services continue to be underused in some districts, especially by poor children, despite the recent removal of user fees. Despite the limited uptake, the ministry of health touts the polic y abolishing user fees for children younger than 5 years as an important success. Timothy is conducting his study at several urban health centers, including the hospital from which he is currently on leave. The research project has received ethics approval from Milena’s institution and from the relevant local review boards.

Recently, Timothy r equested a meeting with Milena saying that he needed advice. He reports that he has identified a system of informal fees that undermines the ministry of health’s official policy by making health care once again too expensive for many families with young children. From what Timothy understands, the fees are levied primarily to fund better obstetric care locally, but some indicators point toward senior administrators keeping a small share for themselves. Timothy worries that making his findings public is too risky for him, especially since his involvement in this fieldwork is well-known. He does not think it possible to share his findings without identifying himself as the source of the information . His hospital is one of the sites where he has identified the system of informal payments. He also has good reasons to believe that some members of the ministry of health are already aware of the situation but have not taken action to address it. Disseminating his results will jeopardize his employment at the hospital, his relationships with government officials, and, potentially, the plans to improve obstetric care.

Milena is also conflicted. She recognizes that she has multiple roles, responsibilities, and interests, and that individual and communal goods are at stake. Identifying and seeking to address informal payment structures could improve accessibility of health care services for children, which is the primary goal of her research program. However, the team has responsibilities to Timothy as their student and colleague. Demanding that he upend his career, either for their benefit or for the improvement of health care accessibility , might fail to respect him as an individual. In addition, bringing the situation to light could embarrass the ministry of health. Because the research program depends on the ministry of health’s authorization, tensions in relationships could lead to premature termination of the research. Such an event would have unpredictable outcomes on the careers of everyone on the research team and on the future of health care acces sibility locally.

6.3 Discussion Questions

How should Milena and Timothy prioritize their responsibilities, and what should they ultimately do?

What preemptive actions could the research team have taken to limit the likelihood that the situation described above would happen?

How should the fact that, aside from Timothy, the research team members are not citizens in the country where they are conducting research be considered in the assessment of their obligations?

Is this a case where developing partnerships with local researchers might be counterproductive? Or, could a more robust partnership with local researchers have positioned the team to better address this issue?

How would the ethical analysis differ if, instead of identifying unequal access due to informal fees, Timothy had observed that those exempted from the fees were being offered a lower standard of care than patients whose fees were not waived?

Anonymous. 1988. The Bamako initiative. Lancet 2(8621): 1177–1178.

Arzberger, P., P. Schroeder, A. Beaulieu, et al. 2004. Promoting access to public research data for scientific, economic, and social development. Data Science Journal 3: 135–152.

Ben Ameur, A., V. Ridde, A.R. Bado, M.G. Ingabire, and L. Queuille. 2012. User fee exemptions and excessive household spending for normal delivery in Burkina Faso: The need for careful implementation. BMC Health Services Research 12: 412. doi: 10.1186/1472-6963-12-412 .

Corbie-Smith, G., S.B. Thomas, M.V. Williams, and S. Moody-Ayers. 1999. Attitudes and beliefs of African Americans toward participation in medical research. Journal of General Internal Medicine 14(9): 537–546.

Costello, A., and A. Zumla. 2000. Moving to research partnerships in developing countries. British Medical Journal 321(7264): 827–829.

Council for International Organizations of Medical Sciences. 2002 . International ethical guidelines for biomedical research involving human subjects . http://www.cioms.ch/publications/layout_guide2002.pdf . Accessed 27 Dec 2012.

Garcia, P.J., and W.H. Curioso. 2008. Strategies for aspiring biomedical researchers in resource limited environments. PLoS Neglected Tropical Diseases 2(8): e274. doi: 10.1371/journal.pntd.0000274 .

Hurst, S.A. 2008. Vulnerability in research and health care: Describing the elephant in the room? Bioethics 22(4): 191–202. doi: 10.1111/j.1467-8519.2008.00631.x .

Hyder, A.A., A. Rattani, C. Krubiner, A.M. Bachani, and N.T. Tran. 2014. Ethical review of health systems research in low- and middle-income countries: A conceptual exploration. American Journal of Bioethics 14(2): 28–37. doi: 10.1080/15265161.2013.868950 .

Lagarde, M., and N. Palmer. 2011. The impact of user fees on access to health services in low- and middle-income countries. Cochrane Database of Systematic Reviews 4: CD009094. doi: 10.1002/14651858.CD009094 .

Macha, J., B. Harris, B. Garshong, et al. 2012. Factors influencing the burden of health care financing and the distribution of health care benefits in Ghana, Tanzania and South Africa. Health Policy and Planning 27(suppl 1): i46–i54.

Mayhew, S.H., J. Doherty, and S. Pitayarangsarit. 2008. Developing health systems research capacities through north–south partnership: An evaluation of collaboration with South Africa and Thailand. BMC Health Research Policy and Systems 6: 8. doi: 10.1186/1478-4505-6-8 .

McIntyre, D., M. Thiede, G. Dahlgren, and M. Whitehead. 2006. What are the economic consequences for households of illness and of paying for health care in low- and middle-income country contexts? Social Science & Medicine 62(4): 858–865.

McPake, B., K. Hanson, and A. Mills. 1993. Community financing of health care in Africa: An evaluation of the Bamako initiative. Social Science & Medicine 36: 1383–1395.

Meessen, B., D. Hercot, M. Noirhomme, et al. 2011. Removing user fees in the health sector: A review of policy processes in six sub-Saharan African countries. Health Policy and Planning 26(suppl 2): ii16–ii29. doi: 10.1093/heapol/czr062 .

Richman, K.A., L.B. Alexander, and G. True. 2012. Proximity, ethical dilemmas, and community research workers. American Journal of Bioethics Primary Research 3(4): 19–29. doi: 10.1080/21507716.2012.714837 .

Ridde, V., E. Robert, and B. Meessen. 2012. A literature review of the disruptive effects of user fee exemption policies on health systems. BMC Public Health 12: 289. doi: 10.1186/1471-2458-12–289 .

Wilson, K. 1992. Thinking about the ethics of fieldwork. In Fieldwork in developing countries , ed. S. Devereux and J. Hoddinott, 179–199. New York: Harvester Wheatsheaf.

7 Case 2: Ethical Challenges in Impoverished Communities: Seeking Informed Consent in a Palestinian Refugee Camp in Lebanon

• Jihad Makhoul DrPH, MPH,
• Rima Afifi PhD, MPH &
• Rima Nakkash DrPH, MPH 

Department of Health Promotion and Community Health, Faculty of Health Sciences, American University of Beirut, Beirut, Lebanon

Jihad Makhoul DrPH, MPH, Rima Afifi PhD, MPH & Rima Nakkash DrPH, MPH

7.1 Background

Begi nning in 1948, the United Nations Relief and Works Agency (UNRWA) established camps in Lebanon to house refugees from Palestine . As of 2013, 12 camps remained (UNRWA 2013). The typical UNRWA camp houses three generations of refugees, most of whom are unemployed and face economic hardships from state-imposed legal and political restrictions (Chaaban et al. 2010). Camp housing is substandard, usually lacking adequate health care and educational infrastructures. A household survey of camp residents older than 15 years found that the mean length of school attendance is 6–7.5 years, the mean yearly household income is below $3,000, and more than half the respondents consider themselves poor (Makhoul 2003; Khawaja et al. 2006).

Family structures in the camp vary, ranging from matriarchal families, extended families, and traditional patriarchal families to even modern families where parent s jointly make decisions. These family structures also include complex formations where, for example, a remarried father lives with his new wife and stepchildren. In such complex families, children often have several guardians or authority figures. Sociocultural conceptions shared by parents and social workers stress the reliance of children on parental decisions—parents know what is best for children, while children know they must obey parental decisions.

In resource-poor settings like the camps, many nongovernmental organizations (NGOs) supplement UNRWA services, thereby gaining influence. The perceived power that the local Palestinian NGOs hold in the community derives from years of providing supplemental economic and social services to residents. Not surprisingly, if an NGO is politicized, it also will hold political power. In this context, if an NGO agrees to participate in a project, residents may agree to participate without paying close attention to the details or the scope of work. They participate either because they trust the NGO to decide on their behalf or because they want to avoid being perceived as opposing an organization that provides them with needed services. Similarly, international NGOs hold perceived power by providing essential services and distributing needed supplies, especially during emergencies. Universities can acquire such power, even unintentionally, not only from the prestige and status that educational institutions generally enjoy, but also from the potential benefits that research projects bring to the camps. Intentional or not, exercising such power can raise unanticipated problems for the research enterprise.

To p rotect research participants, some national and international commissions have published guidance documents about equitable distribution of benefits and respect for autonomy , beneficence , and social justice . These documents include the Nuremberg Code (1947), the Declaration of Helsinki (World Medical Association 1964), The Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979), and the International Ethical Guidelines for Biomedical Research Involving Human Subjects (Council for International Organizations of Medical Science 2002). Even though these international guidelines acknowledge the need to consider culture and community, they lack adequate guidance for community-based public health research (Racher 2007; Bledsoe and Hopson 2009). In addition, these guidelines are difficult to apply in nonbiomedical research contexts in community settings. This difficulty could be attributed to applying guideline s without first considering local contexts (Dawson and Kass 2005; Benatar 2002; Chilisa 2009). Many community-oriented practitioners find the principle s too limiting to guide public health research ethics in community settings and recommend incorporating broader conceptions of respect, trust , inclusion , diversity , participation , empowerment , and advocacy (Racher 2007; Bledsoe and Hopson 2009).

Biomedical guidelines often clash with community interactions, especially in the nonindustrialized world (Bledsoe and Hopson 2009; Matsumoto and Jones 2009; Chilisa 2009). One such clash occurs between individual-oriented societies and more collectivist societies that view personhood and individual decision making through the lens of a person’s relation to society (Marshall and Baten 2003). Another clash occurs between the artificially impersonal character of research environments and the centrality of relationships and partnerships in communities. Randomized clinical trials (RCTs), for example, require control of all possible confounders, a nearly impossible standard to achieve in close-knit and dense community settings (Makhoul et al. 2013). Implementing ethical guidelines in the context of power dynamics (Marshall and Baten 2004), like the pronounced power that males wield over females in patriarchal societies , can instigate numerous clashes. In communities like refugee camps that offer few economic or career opportunities, the perceived power that NGO s and, even more so, academic institutions wield is a force that must be taken into account. In such restricted settings, the power dynamics between researchers and research subjects can take on a subtle coercive character.

These same tensions, challenges, and dynamics will emerge in any efforts to obtain informed consent to participate in research. The emergence may stem from failure to appreciate the unique complexity of local familial, cultural, and political structures, or it may represent limitations in the principles being applied.

7.2 Case Description

A community coalition, initiated by researchers from a nearby university, has been meeting for more than a year to prioritize health concerns for youth in a Palestinian refugee camp near Beirut, Lebanon . The camp is a typical UNRWA camp and includes six elementary schools. The coalition comprises camp residents including youth (17–25 years), UNRWA representatives, camp NGO workers, and members of the university research team. The coalition has decided to focus on the mental health of younger ado lescents (11–13 years) in this Palestinian refugee camp and to develop a research intervention on this issue. Cross-sectional studies and evaluation of interventions that link social and life skills to mental health outcomes strongly support the view that these skills enhance the mental health of youth; however, most of the evidence comes from industrialized settings.

The goal of the intervention is to enhance positive mental health by increasing the social and life skills of young adolescents, who will be recruited through the schools. The six elementary schools have comparable resources and student profiles. Each school has been randomly assigned either to the intervention or to the control arm of the study, and only fifth and sixth graders will participate. Participating students in the intervention group will receive 45 extracurricular sessions of 1½ h each over 9 months and gain skills in solving problems, making decisions, building self-esteem, and enhancing relationships with peers, parent s, and teachers. Parents of the students in the intervention group will receive 15 1-h group sessions, and teachers in the intervention schools will be offered six workshops addressing the same topics. Students randomized to the control group will receive 10 sessions over the course of 9 months, but their parents will not participate in the program. However, because teachers often work in more than one camp school, some teachers at the control schools may participate in the intervention workshops. All participants in either the intervention or control condition must complete pre- and post-assessment questionnaires that measure mental health and social and life skills before and after the intervention and at 6 months follow-up.

Recruitment into the research project will unfold in phases. Toward the end of the school year preceding the intervention, parents will be invited to an informational session about the project that will take place in one of the camp schools. After the informational session, meetings will take place with individual families in their homes to recruit students entering grades 5 and 6. Some youth (ages 17–23 years) who live in the camp will receive training to become part of the recruitment team. These youth will visit the homes of all potential intervention and control participants to explain the study and to obtain parental consent . If the parents consent, students will be invited to the school for further discussion (to ensure confidentiality and autonomy of decision making). Once the study has been explained to them, they’ll be asked individually to give their assent .

You are a member of the university research team leading the effort to obtain informed consent. You would like to obtain consent and assent in accordance with standard international procedures, but you realize their application may need to be adjusted to the context of the camp. In particular, you have considered what role principle s such as trust , inclusion , diversity , and broad community participation should play in the research project. That is why you chose to have older youth from the camp obtain both parental consent and student’s assent, but you are concerned about potential problems that this approach may encounter. Also, given the power dynamics and conditions in the camp, you would like the research team to consider how this project can be used to spearhead a discussion with the community coalition about larger issues of empowerment and advocacy . With this in mind, you plan to address the followin g questions with your research team.

7.3 Discussion Questions

How could the history of Palestinian refugee camps potentially impact the informed consent process and the success of this intervention?

Who are the stakeholder s in this case, and what stake, for or against, do they have in the research project? How would you deal with those who believe the project is not in their or the community’s interests?

What are the advantages and potential disadvantages of using older youth to obtain parental consent and student’s assent? What other steps could be taken to enhance the informed consent seeking process in such social contexts?

What incentives, if any, should be given for participation? To whom should these incentives be given? Given the limited opportunities for the inhabitants of the refugee camps and the perceived power of NGOs, at what point would incentives become compulsive to encourage participation?

How do relationships of power influence the application of informed consent procedures specifically, in this context? What steps can be taken to minimize the effects of power?

What bearing, positive or negative, does the background of the researchers have on the researcher-participant interaction, especially for researchers who have never lived in such camp settings and would be considered outsiders to the camp community?

Beyond the informed consent process, are the researchers simply teaching the adolescents how to adjust to an oppressive arrangement instead of exploring, providing and validating strategies to transform the si tuation? If so, what are some alternative intervention strategies that could foster the latter?

By almost any measure, the camp environment is abnormal for a developing adolescent. Given that social determinants severely challenge the health of all members of the camp community, how should the researchers take into account the unusual and extreme circumstances of the adolescents as they implement and evaluate interventions that aim to change individual-level circumstances and attributes?

Benatar, S.R. 2002. Reflections and recommendations on research ethics in developing countries. Social Science & Medicine 54(7): 1131–1141.

Bledsoe, K.L., and R.K. Hopson. 2009. Conducting ethical research and evaluation in underserved communities. In The handbook of social research ethics , ed. D.M. Mertens and P.E. Ginsberg, 391–406. Thousand Oaks: Sage Publications.

Chaaban, J., H., Ghattas, and R.R., Habib, et al. 2010. Socio-economic survey of Palestinian refugees in Lebanon . American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA). http://fafsweb.aub.edu.lb/aub-unrwa/files/AUB_UNRWA_report_final_draft.pdf . Accessed 3 Jan 2013.

Chilisa, B. 2009. Indigenous African-centered ethics: Contesting and complementing dominant models. In The handbook of social research ethics , ed. D.M. Mertens and P.E. Ginsberg, 407–425. Thousand Oaks: Sage Publications.

Council for International Organizations of Medical Sciences. 2002 . International ethical guidelines for biomedical research involving human subjects . http://www.cioms.ch/publications/layout_guide2002.pdf . Accessed 18 Feb 2014.

Dawson, L., and N.E. Kass. 2005. Views of US researchers about informed consent in international collaborative research. Social Science & Medicine 61(6): 1211–1222.

Khawaja, M., S. Abdulrahim, R.A. Soweid, and D. Karam. 2006. Distrust, social fragmentation and adolescents’ health in the outer city: Beirut and beyond. Social Science & Medicine 63(5): 1304–1315.

Makhoul, J. 2003. Physical and social contexts of the three urban communities of Nabaa, Borj el Barajneh Palestinian Camp and Hay el Sullum. Unpublished report. CRPH, American University of Beirut, Lebanon.

Makhoul, J., R. Nakkash, T. Harpham, and Y. Qutteina. 2013. Community based participatory research in complex settings: Clean mind–dirty hands. Health Promotion International 29(3): 510–517. doi: 10.1093/heapro/dat049 .

Marshall, A., and S. Batten. 2003. Ethical issues in cross-cultural research. In CONNECTIONS’03 , ed. W.M. Roth, 139–151. http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCEQFjAAahUKEwjO7JWKuujIAhXK7CYKHdNyANc&url=http%3A%2F%2Fejournal.narotama.ac.id%2Ffiles%2FEthical%2520Issues%2520in%2520Cross-Cultural%2520Research.pdf&usg=AFQjCNG04xJ3QFK7bIjX_EQUvwrwZRacxg . Accessed 25 Feb 2016.

Marshall, A., and S. Batten. 2004. Researching across cultures: Issues of ethics and power. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 5(3): Article 39. http://nbnresolving.de/urn:nbn:de:0114-fqs0403396 . Accessed 3 June 2015.

Matsumoto, D., and C.A.L. Jones. 2009. Ethical issues in cross-cultural psychology. In The handbook of social research ethics , ed. D.M. Mertens and P.E. Ginsberg, 323–336. Thousand Oaks: Sage Publications.

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research . http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html . Accessed 3 Jan 2013.

Nuremberg Code . 1947. Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2, pp. 181–182. Washington, DC: U.S. Government Printing Office, 1949. http://www.hhs.gov/ohrp/archive/nurcode.html . Accessed 23 Feb 2014.

Racher, F.E. 2007. The evolution of ethics for community practice. Journal of Community Health Nursing 24(1): 65–76.

United Nations Relief and Works Agency (UNRWA). 2013. Lebanon . http://www.unrwa.org/etemplate.php?id=65 . Accessed 4 June 2013.

World Medical Association. 1964. Declaration of Helsinki: Ethical principles for medical research involving human subjects. http://www.wma.net/en/30publications/10policies/b3/ . Accessed 23 Feb 2014.

8 Case 3: Improving Review Quality and Efficiency of Resear ch Ethics Committees to Enhance Public Health Practice in Africa

• Mary Kasule PhD,
• Douglas Wassenaar PhD,
• Carel IJsselmuiden MD, MPH &
• Boitumelo Mokgatla 

Office of Research and Development, University of Botswana, Gaborone, Botswana

Mary Kasule PhD

South African Research Ethics Training Initiative, School of Applied Human Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa

Douglas Wassenaar PhD

Council on Health Research for Development, Geneva, Switzerland

Carel IJsselmuiden MD, MPH

School of Applied Human Sciences, South African Research Ethics Training Initiative, University of KwaZulu-Natal, Pietermaritzburg, South Africa

Africa Office for Council on Health Research for Development, Gaborone, Botswana

Boitumelo Mokgatla

Mapping African Research Ethics Review and Medicines Regulatory Capacity, Gaborone, Botswana

8.1 Background

Many low- to middle-income countries in Africa face a tremendous burden of infectious diseases . Tuberculosis (TB) causes particular concern, with incidence rising and the greatest prevalence in children . Compounding this concern is the lack of an easy-to-use and accurate diagnostic test (World Health Organization 2012). To address these challenges, the World Health Organization’s (WHO) 2011 global plan to stop TB by 2050 urgently calls for more research to develop diagnostics, drugs, and vaccines. WHO’s call reinforces the 2008 Global Ministerial Forum on Research for Health held in Mali, which recommended that each country allocate 2 % of health ministry funds to health care research (Yazdizadeh et al. 2010). All research involving human subjects will require review by institutional review boards (IRBs) or, as they are generally known in Africa, research ethics committees (RECs) . But to expedite the process of high-quality ethical reviews necessary to keep pace with these new research initiatives, a corresponding investment in REC funding and training should be made.

In TB-endemic areas of Africa, the volume and complexity of research have increased without a corresponding strengthening in the capacity of local RECs (WHO 2011). At least 190 RECs operate throughout Africa, but the quality and capacity of each vary widely (IJssemuiden et al. 2012). Although some RECs still lac k adequate research regulatory frameworks, the major challenge to strengthening capacity is lack of funding (Kass et al. 2007). This means, for example, that few, if any, African RECs have tools like electronic information management systems to coordinate submissions efficiently. It also means that few have trained REC administrators, a gap rightly identified as the missing link to improved quality and throughput of ethical review (IJsselmuiden et al. 2012). These factors can delay ethical reviews and create problems with quality and consistency (Milford et al. 2006; Kass et al. 2007). Whenever significant research funds are wasted on managing inefficient RECs, fewer funds are available to study ways to improve public health care services (Tully et al. 2000). This waste of resources on inefficient ethical review affects the timeliness of health services, which, in turn, affects subsequent health care polic y and decision making. Ironically, such wastefulness poses an unethical barrier to potentially beneficial public health research activities. Worse, these inefficiencies can cost research institutions a chance to compete for grants that require prior ethical review of research proposals by the country’s internal REC.

In Africa, external grants are often used to fund health research activities, whereas REC funding typically is either nonexistent or constrained by more pressing health care needs. Attempting to prioritize and allocate resources for activities with outcomes linked to funding puts policy makers in a dilemma . On the one hand, diverting funds from the immediate treatment of life-threatening diseases to a weak, inefficient REC can waste critical resources. On the other hand, not allocating funds to strengthen RECs can lead to the loss of external research funding, the very research that could reduce the burden of disease in the long run. Moreover, external funding, though filling a critical gap, often heightens the tensions at play in prioritizing between immediate needs for health care and long term needs for research and RECs.

8.2 Case Description

A multinational pharmaceutical c ompany put out a call for proposals to research institutions in sub-Saharan Africa to apply for a research grant. The 3-year grant, which provides 500,000 U.S. dollars per year to develop an effective paediatric TB diagnostic tool, would involve conducting clinical trials in five African TB-endemic countries. Successful award of the grant is contingent upon timely review of the proposal by the applicant’s national REC.

In one country eligible for the grant, the ministry of health (MoH) encouraged its National Tuberculosis Research Centre to apply. The grant funding would have boosted the country’s long-term efforts to strengthen the capacity of its public health research by restructuring its TB treatment protocol. The Research Centre promptly submitted a proposal to the national REC, which levies 10 % of the grant as overhead to sustain the REC.

Despite the overhead funding, the country’s national REC l acks an administrator formally trained in research ethics and a robust ethics review structure. Although the REC receives more than 100 applications annually, it only meets every 3 months, often missing deadlines, because it cannot afford essential tools to coordinate submissions efficiently. To have a proposal reviewed; applicants have to submit 20 hard copies of the research application form and 10 copies of all other study materials. The review procedure typically forces the principal investigator of a clinical trial to submit nearly 20 kg of paper copies, a considerable sum in supplies and manpower. Despite its high profile, the TB Research Centre’s grant application does not prove to be an exception to the notoriously slow review process.

Professor Y, a highly capable public health specialist, directs the public health department in the local MoH. She also lectures at a local medical school, serves as Principal Investigator (PI) of an ongoing TB clinical trial in the country, and has extensive experience at all levels of REC activity and oversight. Unfortunately, Professor Y has never had formal training in research ethics, which is critical for anyone involved in managing REC activities. Because of her background, Professor Y became aware of the delays in reviewing the TB Research Centre’s application. Recognizing its importance to the country, Professor Y offered to serve as the primary reviewer for the proposal. Professor Y called an ad hoc REC meeting. At this meeting, the other members, who had only received copies of the grant application form to prepare for their review, unanimously agreed to outsource review of the protocol because they lacked the expertise to evaluate the application. Amid these delays, institutions in other countries competing for the same grant, having already received ethical clearance from their RECs, were awarded the grant. Not only did the delays cost the country a funding opportunity to enhance its public health research capacity, but preparing the application also wasted precious time and scarce resources.

In response to this bungled opportunity, the MoH set up a task force to analyse the situation and offer recommendations. In its report, the task force recommended allocating more resources to RECs to strengthen capacity. Due to budget constraints, the MoH had to divert the money allocated to RECs from the antiretroviral program. Meanwhile, the MoH recommended temporarily outsourcing all REC services to a U.S. based clinical research organization.

8.3 Discussion Questions

What ethical tension or challenges could result from the insufficiencies in REC capacity that forced the MoH’s decision to divert funds from the antiretroviral program to strengthen REC capacity?

How should a country prioritize between the need to foster research, which can have significant long-term impact and immediate health care needs?

Funding for the research grant and temporary outsourcing of ethical reviews will come from multinational or U.S. based partners. What are the advantages and disadvantages for developing countries to accept such funding? What impact does accepting such funding have on a country’s ability to determine its own health priorities?

Professor Y has public health credentials, TB expertise, and extensive experience as an REC administrator. The case suggests that had she followed the procedures for the review process, the grant application might have been successful, even though she apparently lacks formal ethics training.

According to international research ethics regulations, what procedures should Professor Y have followed when distributing the proposal for review, allocating reviewers, and setting up the REC meeting?

How critical is formal ethics training to serving on an REC or to overseeing the development of REC capacity nationwide?

Is it a good use of time for someone like Professor Y to be serving administratively on an REC?

Would you recommend that the MoH create a permanent position for a trained research ethics administrator solely responsible for REC administration issues instead of allowing volunteers like Professor Y, who have multiple roles and respon sibilities, to oversee the activity?

Given the cultural and economic differences between developed Western nations that sponsor research and African host countries, should formal ethics training to prepare for serving on an REC be modelled on Western training or on some other model?

Keeping the interests and values of all stakeholder s in mind, consider the best ways to address the strengthening of REC capacity in African low- to middle-income countries at the local and global levels.

IJssemuiden, C., D. Marias, D. Wassenaar, et al. 2012. Mapping African ethical review committee activity onto capacity needs: The MARC initiative and HRWEB’s interactive database of RECSs in Africa. Developing World Bioethics 12(2): 74–86.

Kass, N.E., A.A. Hyder, A. Ajuwon, et al. 2007. The structure and function of research ethics committees in Africa: A case study. PLoS Medicine 4(1): e3. doi: 10.1371/journal.pmed.0040003 .

Milford, C., D. Wassenaar, and C. Slack. 2006. Resources and needs of research ethics committees in Africa: Preparations for HIV vaccine trials. IRB: Ethics & Human Research 28(2): 1–9.

Tully, J., N. Ninis, R. Booy, and R. Viner. 2000. The new system of review by multi-centre research ethics committees: Prospective study. British Medical Journal 320(7243): 1179–1182.

World Health Organization (WHO). 2011. An international road map for tuberculosis research: Towards a world free of tuberculosis . Geneva: World Health Organization.

World Health Organization (WHO). 2012. Global tuberculosis report 2012 . Geneva:World Health Organization. http://apps.who.int/iris/bitstream/10665/75938/1/9789241564502_eng.pdf . Accessed 3 June 2015.

Yazdizadeh, B., R. Majdzadeh, and H. Salmasian. 2010. Systematic review of methods for evaluating healthcare research economic impact. Health Research Policy and Systems 8: 6. doi: 10.1186/1478-4505-8-6 .

9 Case 4: Internet-Based HIV/AIDS Education and Prevention Programs in Vulnerable Populations: Black Men Who Have Sex with Men

• Amar Kanekar PhD, MPH, MB, MCHES, CPH 

Department of Health, Human Performance and Sport Management, University of Arkansas at Little Rock, Little Rock, AR, USA

Amar Kanekar PhD, MPH, MB, MCHES, CPH

This case is presented for instructional purposes only. The ideas and opinions expressed are the author ’ s own. The case is not meant to reflect the official position , views , or policies of the editors , the editors ’ host institutions , or the author ’ s h ost institution .

9.1 Background

Since surfacing more than 30 years ago, the HIV/AIDS pandemic has devastated populations worldwide. Various factors have contributed to this epidemic, such as lack of awareness of HIV status, stigma, homophobia, negative perceptions about HIV testing , socioeconomic factors, behavioral risk factors, and high prevalence of sexually transmitted diseases (Centers for Disease Control and Prevention 2015). In the United States, one goal of the national HIV/AIDS strategy is to re duce HIV-related hea lth disparities. Any reduction in the collective risk of acquiring HIV will require behavior change interventions in communities with the highest HIV prevalence. However, extending the reach of HIV/AIDS preventive interventions in remote areas with limited access to HIV testing and prev ention services has proved difficult (Office of National AIDS Policy 2012).

The challenge of reaching some populations has led many practitioners to consider innovative intervention methods that rely on technologies such as the Internet and mobile telephones. Public health profession als are using these technologies to deliver health education to vulnerable populations in big cities, small towns, and hard-to-reach rural areas. In particular, the past decade has seen more health communication efforts using the Internet to prevent HIV and sexually transmitted diseases (Bull et al. 2007, 2009; Rietmeijer and McFarlane 2009). Studies of interventions that use Internet chat rooms, online modules, and health intervention websites show promising results that bode well for the future of these technolo gies (Chiasson et al. 2009; Moskowitz et al. 2009).

Studies conducted with marginalized and vulnerable populations such as black men who have sex with men (MSM) can pose difficulties. On the technology front, many difficulties reflect the Internet’s relative novelty for conducting studies and the consequent lack of clarity in dealing with the rules, language, and norms of a virtual community culture compared with a traditional community culture (Loue and Pike 2010). On the allocation front, having limited resources usually implies that tailoring interventions to a specific group will mean forgoing benefits to another group. Still, in promoting the health of populations, public health professionals must strive to distribute resources fairly while responding to the specific needs of racial, ethnic, and cultural groups. These concurrent goals require maintaining a delicate balance between targeted and population interventions. On the ethics front, because some projects straddle the line between research and practice, public health profession als can become unsure about whether the ethical guideline s of research or of community work should govern their actions. They must bear in mind that trust , which is essential for conducting community-based participatory research , becomes more crucial when working with vulnerable populations, which tend to show a high degree of mistrust (Loue and Pike 2010). Those who study vulnerable populations need to negotiate community entry either by developing trust or by working closely with local practitioners and building upon established trust.

In the United States , the HIV/AIDS epidemic has hit the African-American population hardest, with black men accounting for 70 % of new HIV infections . Between 2006 and 2009, new HIV infections increased 48 % among black 13- to 24-year-old MSM (Centers for Disease Control and Prevention 2015); by 2009, 37 % of new HIV cases among black men were from black MSM. Given this high prevalence, before the end of 2015, the U.S. national HIV/AIDS strategy calls for a 20 % increase in the proportion of African Americans diagnosed with HIV who have an undetectable viral load (Office of National AIDS Policy 2012). Already, information about HIV issues affecting young MSM (Mustanski et al. 2011) is widely available on the Internet, including messages about how to reduce risk (Hightow-Weidman et al. 2011) and interventions to prevent HIV risk behaviors among MSM (Rhodes et al. 2010) and blacks who inject drugs (Washington and Thomas 2010). Studies show that online delivery of HIV counseling and behavioral interventions for MSM at high risk for HIV are successful, suggesting that the future holds great promise for Internet-delivered interventions for this vulnerable population (Chiasson et al. 2009; Moskowitz et al. 2009).

9.2 Case Description

Dr. Albert, a social scientist, and Dr. Baines, a community worker, are employed by a public health agency in a medium-size U.S. town. The agency has asked them to determine whether a skill-based, Internet-delivered intervention to promote safer sex among young Black MSM will increase HIV knowledge and increase the frequency of using safer-sex practices.

Project participants will be recruited via the Internet in gay chat rooms and be verified electronically by using Internet Protocol and Microsoft Access usernames and passwords (Bull 2011). Participants will be surveyed before they begin the training modules and again at 1- and 6-week intervals after completing the modules. Participants will be randomly assigned to control and experimental arms. Those in the control arm will receive 6 h of online training about health and well-being (e.g., nutrition, physical activity, stress reduction). The experimental arm will receive a 6-h online program including two 1-h modules on each of the following topics: (a) HIV/AIDS-related knowledge; (b) development and improvement of safe sex skills, such as partner communication and monogamous sexual relationships; and (c) self-efficacy in using condoms. The modules will include automated reminders for HIV testing . The study will measure improved knowledge on HIV/AIDS , partner communication about safer sex, and condom usage self-efficacy. Data will be analyzed using statistical software.

Dr. Albert thinks the results could be generalized not only to black MSM in the community but also to black MSM overall. He plans to write an article describing the results for publication in a scientific journal. Although Dr. Baines knows the impact of education on health, especially in underprivileged communities, she wants to educate only a subset of the community they will reach. Besides, since their work is for a public health agency, she believes the intervention ought to reach as many community members possible. She claims the project’s goal is to provide a vulnerable and disadvantaged population with much needed education on health matters and health-promoting behavior and doubts their project constitutes research.

Dr. Albert worries that, because his colleague lacks academic rigor and underappreciates the role of evidence, she fails to appreciate the project’s rationale and design and, as a result, is indifferent to the challenges the Internet poses (e.g., technology-induced bias, protection of confidentiality). Conversely, Dr. Baines believes Dr. Albert has missed the boat and is wasting resources, spuriously introducing statistical analysis of experimental and control arms into what the agency clearly had intended as an education intervention.

9.3 Discussion Questions

Is this a research project? Should approval from an ethics review committee be obtained? Or should the project be considered nonresearch because it will improve the health of the population? How should you decide?

Does the fact that the project is funded by a public health agency play a role in this discussion? Should public health agencies conduct studies to generate evidence about HIV education and prevention interventions? Should agencies focus on the delivery of interventions based on the existing evidence?

How is this black MSM population vulnerable, and how should this vulnerability be addressed in research and nonresearch interventions?

Do Dr. Albert and Dr. Baines have ethical obligations to other community populations? On what basis is the public health agency justified in advancing interventions that target only a subgroup of the community?

How should research studies on Internet-based interventions be conducted to ensure scientific validity, given the difficulties of knowing, for example, whether the participant meets the study’s inclusion criteria? Which measures should be taken to protect the privacy and confidentiality of participants?

How should you decide what level and type of evidence you need to back a public health educational intervention? Should public health professionals always use science to validate educational interventions?

Bull, S. 2011. Technology-based health promotion . Thousand Oaks: Sage Publications.

Bull, S.S., S. Phibbs, S. Watson, and M. McFarlane. 2007. What do young adults expect when they go online? Lessons for development of an STD/HIV and pregnancy prevention website. Journal of Medical Systems 31(2): 149–158.

Bull, S., K. Pratte, N. Whitesell, C. Rietmeijer, and M. McFarlane. 2009. Effects of an Internet based intervention for HIV prevention: The Youthnet trials. AIDS and Behavior 13(3): 474–487. doi: 10.1007/s10461-008-9487-9 .

Centers for Disease Control and Prevention. 2015. HIV Among African Americans. http://www.cdc.gov/HIV/risk/racialethnic/aa/index.html . Accessed 2 June 2015.

Chiasson, M.A., F.S. Shaw, M. Humberstone, S. Hirshfield, and D. Hartel. 2009. Increased HIV disclosure three months after an online video intervention for men who have sex with men (MSM). AIDS Care 21(9): 1081–1089. doi: 10.1080/09540120902730013 .

Hightow-Weidman, L.B., B. Fowler, J. Kibe, et al. 2011. HealthMpowerment.org: Development of a theory-based HIV/STI website for young black MSM. AIDS Education and Prevention 23(1): 1–12. doi: 10.1521/aeap.2011.23.1.1 .

Loue, S., and E.C. Pike. 2010. Case studies in ethics and HIV research . New York: Springer.

Moskowitz, D.A., D. Melton, and J. Owczarzak. 2009. PowerON: The use of instant message counseling and the Internet to facilitate HIV/STD education and prevention. Patient Education and Counseling 77(1): 20–26. doi: 10.1016/j.pec.2009.01.002 .

Mustanski, B., T. Lyons, and S.C. Garcia. 2011. Internet use and sexual health of young men who have sex with men: A mixed-methods study. Archives of Sexual Behavior 40(2): 289–300. doi: 10.1007/s10508-009-9596-1 .

Office of National AIDS Policy. 2012. National HIV/AIDS strategy: Update of 2011–2012 federal efforts to implement the national HIV/AIDS strategy . http://www.aids.gov/federal-resources/national-hiv-aids-strategy/implementation-update-2012.pdf . Accessed 2 June 2015.

Rhodes, S.D., K.C. Hergenrather, J. Duncan, et al. 2010. A pilot intervention utilizing Internet chat rooms to prevent HIV risk behaviors among men who have sex with men. Public Health Reports 125(suppl 1): 29–37.

Rietmeijer, C.A., and M. McFarlane. 2009. Web 2.0 and beyond: Risks for sexually transmitted infections and opportunities for prevention. Current Opinion in Infectious Diseases 22(1): 67–71. doi: 10.1097/QCO.0b013e328320a871 .

Washington, T.A., and C. Thomas. 2010. Exploring the use of Web-based HIV prevention for injection-drug-using black men who have sex with both men and women: A feasibility study. Journal of Gay & Lesbian Social Services 22(4): 432–445. doi: 10.1080/10538720.2010.491747 .

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We Are Underestimating the Health Harms of Climate Disasters

As extreme weather becomes more common and catastrophic, we need new public health systems to better understand, prepare, and respond

Humacao, Puerto Rico, after Hurricane Maria devastated the island in 2017. Research suggests the true human and financial cost of the disaster may have been undercounted. Photo via AP Images/Andre Kang

Gregory A. Wellenius

Neil singh bedi.

The National Centers for Environmental Information (NCEI), which keeps track of severe weather events across the United States, has counted 378 billion-dollar disasters in the country since 1980. According to the NCEI, these highly destructive disasters, each with damages and costs topping $1 billion, have collectively taken 16,356 lives and cost $2.69 trillion. Continued climate change has led to disasters becoming both more frequent and more damaging: more than 100 of these disasters took place in the last five years (from 2019–2023), including 60 between 2020 and 2022. In 2023, there were 28 billion-dollar disasters in just one year .

Even these staggering numbers may be an undercount. Recent research highlights that the adverse, and uncounted, health impacts of disasters are much greater.

In assessing the human health impacts of a disaster, we typically focus on the number of deaths directly attributed to that disaster (i.e., the death toll). Yet, this number represents only the tip of the iceberg in terms of the adverse health impacts. Evidence shows that many disasters can impact our health for weeks, months, or even years after the initial event. A stark example of this was after Hurricane Maria swept across Puerto Rico in September 2017, devastating the island. The official death toll in December of that year was 64. Later studies , however, suggested that the mortality resulting from the hurricane was 70 times higher. The impacts on physical and mental health were surely far greater.

The NCEI approach to answering the important question—“What are the human and financial costs of extreme weather events and climate disasters?”—only tells part of the story. A full accounting of the total impacts of disasters must also consider the uncounted harms to human life. Comprehensively understanding the costs of disasters can effectively drive public health investments, policy priorities, and preparedness to avoid the worst outcomes.

Unfortunately, these uncounted harms are uniquely challenging to measure. The short-term and long-term health impacts of a disaster go far beyond the immediate death toll typically captured in official statistics. For example, someone may sustain an injury either during a severe storm or weeks later as they repair their damaged home. Similarly, mold in a water-damaged home takes time to grow and cause respiratory disease, and wildfire smoke may have effects lasting long after immediate exposure. Disasters may increase fatalities or illnesses even when those health effects are not easily attributable to the event: exposure to extreme heat can lead not only to heatstroke, but also to dehydration or kidney disease—conditions for which it’s harder to pinpoint the cause. 

In recently published research , our research group took a new step in quantifying the health impacts of billion-dollar disasters on US Medicare beneficiaries (mostly aged 65 years and older). Specifically, we assessed emergency department visits, nonelective hospitalizations, and deaths up to six weeks after disasters occurring between 2011 and 2016. We found that in the first week after an average-sized disaster, there were 268 excess emergency department visits and 20 excess deaths. Notably, the increase in mortality extends through the end of the study period of six weeks, long after the immediate death toll would typically be counted and reported. Finally, we found that the health harms were most pronounced in those communities that suffered the most severe economic losses and damages. In other words, the counties that bore the greatest economic destruction also had the greatest need for additional healthcare and suffered more deaths.

The incomplete assessment of the health impacts of disasters presents an important challenge for communities and governments working to build resilience to these increasing threats. Decisions regarding climate adaptation policies, including the just allocation of limited public health resources, should be based on a timely and accurate understanding of the impacts of disasters on specific communities. Similarly, healthcare systems in affected communities need timely and accurate information to fully prepare in advance of the next disaster. Equally important, public appreciation of the true dangers and costs of disasters is influenced by the available information—which, in turn, is an important driver of investment in public health resources and policy priorities for locally and nationally elected leaders.

Information on health impacts would, ideally, be available during or soon after an event so that we can optimally respond and prepare for the next disaster. But the true health impacts of devastating disasters typically take years to establish. 2023 was extremely hot across much of the US and the warmest year on record globally; yet we may not know for a year or more how many excess deaths or hospitalizations occurred because of the heat. 

Developing more comprehensive estimates of the health impacts of extreme weather events will require new systems, practices, and collaborations between public health agencies and the healthcare sector. New metrics will have to be defined, collected, and reported in a consistent and timely manner, with appropriate patient privacy protections. Analogous systems for tracking health outcomes already exist in the US. However, these systems are highly fragmented and compartmentalized, and there are currently only a few cities or states that have systems to track population health in near real time.

Creating or augmenting existing systems for this purpose at a national level will likely require substantial funding and government oversight, but the return on these investments is potentially very high. As extreme weather events become ever more common and costly, timely and comprehensive information on their adverse health impacts will help individuals, communities, healthcare providers, and other key stakeholders best prepare and reduce the suffering that follows. 

The primary goal of public health and health systems is to protect the well-being of people, especially those who are vulnerable to disasters. As we continue to mitigate and hopefully reverse the effects of anthropogenic climate change, we must also effectively measure and respond to the challenges our communities are facing today.

Gregory A. Wellenius is a Boston University School of Public Health professor of environmental health and director of the BU Center for Climate & Health.

Neil Singh Bedi is a rising fourth-year medical student at the BU Chobanian & Avedisian School of Medicine and a researcher at the BU School of Public Health.

“Expert Take”  is a research-led opinion page that provides commentaries from BU researchers on a variety of issues—local, national, or international—related to their work. Anyone interested in submitting a piece should contact  [email protected] .  The Brink  reserves the right to reject or edit submissions. The views expressed are solely those of the author and are not intended to represent the views of Boston University.

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Mental health and the pandemic: What U.S. surveys have found

The coronavirus pandemic has been associated with worsening mental health among people in the United States and around the world . In the U.S, the COVID-19 outbreak in early 2020 caused widespread lockdowns and disruptions in daily life while triggering a short but severe economic recession that resulted in widespread unemployment. Three years later, Americans have largely returned to normal activities, but challenges with mental health remain.

Here’s a look at what surveys by Pew Research Center and other organizations have found about Americans’ mental health during the pandemic. These findings reflect a snapshot in time, and it’s possible that attitudes and experiences may have changed since these surveys were fielded. It’s also important to note that concerns about mental health were common in the U.S. long before the arrival of COVID-19 .

Three years into the COVID-19 outbreak in the United States , Pew Research Center published this collection of survey findings about Americans’ challenges with mental health during the pandemic. All findings are previously published. Methodological information about each survey cited here, including the sample sizes and field dates, can be found by following the links in the text.

The research behind the first item in this analysis, examining Americans’ experiences with psychological distress, benefited from the advice and counsel of the COVID-19 and mental health measurement group at Johns Hopkins Bloomberg School of Public Health.

At least four-in-ten U.S. adults (41%) have experienced high levels of psychological distress at some point during the pandemic, according to four Pew Research Center surveys conducted between March 2020 and September 2022.

Young adults are especially likely to have faced high levels of psychological distress since the COVID-19 outbreak began: 58% of Americans ages 18 to 29 fall into this category, based on their answers in at least one of these four surveys.

Women are much more likely than men to have experienced high psychological distress (48% vs. 32%), as are people in lower-income households (53%) when compared with those in middle-income (38%) or upper-income (30%) households.

In addition, roughly two-thirds (66%) of adults who have a disability or health condition that prevents them from participating fully in work, school, housework or other activities have experienced a high level of distress during the pandemic.

The Center measured Americans’ psychological distress by asking them a series of five questions on subjects including loneliness, anxiety and trouble sleeping in the past week. The questions are not a clinical measure, nor a diagnostic tool. Instead, they describe people’s emotional experiences during the week before being surveyed.

While these questions did not ask specifically about the pandemic, a sixth question did, inquiring whether respondents had “had physical reactions, such as sweating, trouble breathing, nausea, or a pounding heart” when thinking about their experience with the coronavirus outbreak. In September 2022, the most recent time this question was asked, 14% of Americans said they’d experienced this at least some or a little of the time in the past seven days.

More than a third of high school students have reported mental health challenges during the pandemic. In a survey conducted by the Centers for Disease Control and Prevention from January to June 2021, 37% of students at public and private high schools said their mental health was not good most or all of the time during the pandemic. That included roughly half of girls (49%) and about a quarter of boys (24%).

In the same survey, an even larger share of high school students (44%) said that at some point during the previous 12 months, they had felt sad or hopeless almost every day for two or more weeks in a row – to the point where they had stopped doing some usual activities. Roughly six-in-ten high school girls (57%) said this, as did 31% of boys.

On both questions, high school students who identify as lesbian, gay, bisexual, other or questioning were far more likely than heterosexual students to report negative experiences related to their mental health.

Mental health tops the list of worries that U.S. parents express about their kids’ well-being, according to a fall 2022 Pew Research Center survey of parents with children younger than 18. In that survey, four-in-ten U.S. parents said they’re extremely or very worried about their children struggling with anxiety or depression. That was greater than the share of parents who expressed high levels of concern over seven other dangers asked about.

While the fall 2022 survey was fielded amid the coronavirus outbreak, it did not ask about parental worries in the specific context of the pandemic. It’s also important to note that parental concerns about their kids struggling with anxiety and depression were common long before the pandemic, too . (Due to changes in question wording, the results from the fall 2022 survey of parents are not directly comparable with those from an earlier Center survey of parents, conducted in 2015.)

Among parents of teenagers, roughly three-in-ten (28%) are extremely or very worried that their teen’s use of social media could lead to problems with anxiety or depression, according to a spring 2022 survey of parents with children ages 13 to 17 . Parents of teen girls were more likely than parents of teen boys to be extremely or very worried on this front (32% vs. 24%). And Hispanic parents (37%) were more likely than those who are Black or White (26% each) to express a great deal of concern about this. (There were not enough Asian American parents in the sample to analyze separately. This survey also did not ask about parental concerns specifically in the context of the pandemic.)

Looking back, many K-12 parents say the first year of the coronavirus pandemic had a negative effect on their children’s emotional health. In a fall 2022 survey of parents with K-12 children , 48% said the first year of the pandemic had a very or somewhat negative impact on their children’s emotional well-being, while 39% said it had neither a positive nor negative effect. A small share of parents (7%) said the first year of the pandemic had a very or somewhat positive effect in this regard.

White parents and those from upper-income households were especially likely to say the first year of the pandemic had a negative emotional impact on their K-12 children.

While around half of K-12 parents said the first year of the pandemic had a negative emotional impact on their kids, a larger share (61%) said it had a negative effect on their children’s education.

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How Americans View the Coronavirus, COVID-19 Vaccines Amid Declining Levels of Concern

Online religious services appeal to many americans, but going in person remains more popular, about a third of u.s. workers who can work from home now do so all the time, how the pandemic has affected attendance at u.s. religious services, economy remains the public’s top policy priority; covid-19 concerns decline again, most popular.

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The Biostatistics Department is proud to be home to a number of  faculty rated by Reaserch.com as  among the top mathematics research scientists, on both a national and global level.   A report  with the annual ranking aims to increase the online visibility of both existing and rising mathematics experts.  We are particularly proud to recognize the research and contributions of  LJ Wei ,  Xihong Lin,  and  James Robins,  who are all included in the list.

Dr. Wei’s research is in the area of developing statistical methods for the design and analysis of clinical trials. In 1977-78 he introduced the “urn design” for two-arm sequential clinical studies. This design has been utilized in several large-scaled multi-center trials.  Dr. Wei has developed numerous methods for analyzing data with multiple outcome or repeated measurements obtained from study subjects. In particular, his “multivariate Cox procedures” to handle multiple event times have become quite popular. Currently, Dr. Wei and his colleagues are developing graphical and numerical methods for checking the adequacy of the Cox proportional hazards model, other semi-parametric survival models, parametric models, and random effects models for repeated measurements.

Dr.  Lin’s research interests lie in the development and application of scalable statistical and machine learning methods for the analysis of massive and complex genetic and genomic, epidemiological and health data. Some examples of her current research include analytic methods and applications for large scale Whole Genome Sequencing studies, biobanks and Electronic Health Records, techniques and tools for whole genome variant functional annotations, analysis of the interplay of genes and environment, multiple phenotype analysis, polygenic risk prediction and heritability estimation.

Dr. Robins is  best known for advancing methods for drawing causal inferences from complex observational studies and randomized trials, particularly those in which the treatment varies with time. In 1986, Robins introduced a new framework for drawing causal inference from observational data. He showed that in non-experimental data, exposure is almost always time-dependent, and that standard methods such as regression are therefore almost always biased. Robins described two new methods for controlling for confounding bias, which can be applied in the generalized setting of time-dependent exposures: the G-formula and G-Estimation of Structural Nested Models. Later, he introduced a third class of models, Marginal Structural Models, in which the parameters are estimated using inverse probability of treatment weights. He has also contributed significantly to the theory of dynamic treatment regimes, which are of high significance in comparative effectiveness research and personalized medicine.

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Addressing Health Disparities through Community Participation: A Scoping Review of Co-Creation in Public Health

Sergio morales-garzón.

1 Public Health, History of Science and Gynaecology Department, Miguel Hernández University, 03550 Alicante, Spain

Lucy Anne Parker

2 CIBER in Epidemiology and Public Health, 28029 Madrid, Spain

Ildefonso Hernández-Aguado

Manuel gonzález-moro tolosana, maría pastor-valero.

3 Programa de Pós-Graduação em Saúde Coletiva, Departamento de Medicina Preventiva, Faculdade de Medicina FMUSP, Universidade de São Paulo, Sao Paulo 05508-220, Brazil

Elisa Chilet-Rosell

Background: There is general agreement regarding the relevance of community involvement in public health policy, practice, and research to reduce health inequities. Objective: This review aims to analyse the experiences of community engagement in public health actions, with particular attention to methodologies used and how community participation is articulated. Method and Analysis: We searched the Web of Science, EBSCO, and ProQuest for scientific articles published in peer-reviewed journals. We recorded methodological aspects, the approach to equity, actors that participated in the actions, and participation of the community in different phases (agenda setting, design, implementation, and evaluation). Results: Of 4331 records, we finally included 31 studies published between 1995 and 2021. Twelve studies referred to Community-Based Participatory Research as the framework used. The actions addressed equity, mainly by tackling economic vulnerability (n = 20, 64%) and racial discrimination (n = 18, 58%). Workshops were the most used method. Participation was frequently observed in the design and implementation phases of the action, but it was reduced to community feedback in the evaluation. Conclusions: Co-created public health actions offer the opportunity to reduce health inequity and promote social change; yet, further effort is needed to involve communities in the entire cycle of decision making.

1. Introduction

Multilateral health institutions, public health agencies, and the scientific community agree that the involvement of communities in public health policy, practice, and research is a necessary condition for achieving their goals and reducing social inequalities in health [ 1 , 2 , 3 ]. Among the ten essential public health services that should be implemented in all communities, according to the Centers for Disease Control and Prevention (U.S.), two are related to community participation: “Communicate effectively to inform and educate people about health, factors that influence it, and how to improve it”, which is a first step towards fostering community participation; and, “Strengthen, support, and mobilize communities and partnerships to improve health” [ 4 ]. Active citizen participation, empowerment, and community mobilization have been inherent features of Health Promotion since its origins and are, in fact, a requirement of good public health practice [ 5 , 6 ]. Public health ethical frameworks include community participation as a requirement for different actions. The Nuffield Council on Bioethics (U.K.) recommends minimising interventions that are introduced without the individual consent of those affected, or without procedural justice arrangements (such as democratic decision-making procedures) which provide adequate mandate [ 7 ]. Similarly, the principles of the ethical practice of public health of the American Public Health Association (U.S.) indicate that public health institutions should provide communities with the information they have that is needed for decisions on policies or programs, and that they should obtain the community’s consent for their implementation. Moreover, public health policies, programs, and priorities should be developed and evaluated through processes that ensure an opportunity for input from community members [ 8 ].

Consequently, the participation of citizens and communities in public health practice is not an option; it is a core part of public health action. The challenge is to identify the ideal forms, degrees, and procedures of participation to ensure that policies, programs, and interventions achieve optimal outcomes in terms of health, wellbeing, and equity. A variety of approaches have been described in public health practice and research to engage citizens and communities. Whatever approach is taken to incorporate community participation in public health activities, it must address the continuing challenge of inequalities in health and wellbeing.

Given that the social determinants of health inequalities are potentially modifiable, community engagement interventions can play a key role in the reduction of health inequalities. The evaluation of such interventions suggests they offer the ability to identify health inequalities and particular aspects that are uniquely identifiable through community participation [ 9 ]. According to the review carried out by Heimburg and Ness [ 10 ], public health and co-creation find their nexus in the importance they lend to community participation and the application of a more human-centred approach in any health action. In other words, they find their union in the fundamental aspect of the community and its wellbeing. Some of the terms and methodologies related to participation are outlined below.

1.1. Citizen and Community Engagement in Public Health

The National Institute for Health and Clinical Excellence (U.K.) views community engagement as “encompassing a range of approaches to maximise the involvement of local communities in local initiatives to improve their health and wellbeing and reduce health inequalities. This includes needs assessment, community development, planning, design, development, delivery, and evaluation” [ 11 ].

Community engagement is applied both to improve service delivery and to enhance the capacity and empowerment of communities to improve their health [ 12 ]. Participation of citizens in improving the delivery of health interventions can help to tailor the design of interventions to users’ needs, and to facilitate implementation and adherence. Yet, this is not the only kind of involvement of lay people that health promotion requires to achieve its goals. The participation of target populations can also contribute to improving the reach of interventions designed by professionals and to facilitate maximum coverage, removing difficulties of access and reception by the most marginalised groups [ 13 ]. Regarding public health policy, when the need for community involvement is invoked, reference is often made to the fact that it leads to more democratic and inclusive policies. Effective participation increases individual and collective control; this genuinely devolves sufficient power to the population to promote health equity by addressing the social conditions that contribute to poor health, in collaboration with professionals, health authorities, and other stakeholders [ 14 , 15 ].

A Science for Policy report by the Joint Research Centre (JRC) (BE), the European Commission’s science and knowledge service, indicates that “a boost in democratic legitimacy, accountability and transparent governance can be one of the main positive outcomes of community engagement” [ 16 ]. Among the recommendations, the JRC document states that, “A better use and integration of citizens’ inputs can potentially expand the evidence or expert-based paradigm towards a citizen-based policy-making. This implies that not only more types of knowledge are needed at the table, but also the recognition that community engagement is a matter of democratic rights to be differentiated from pure interests.” There is an interest in the involvement of citizens and communities in public policy in the European Union that is reflected in various actions, such as the promotion of citizen science, which, by involving citizens in the production of knowledge, has been proposed as a facilitator of more inclusive policy-making [ 17 ].

It is important to note that the term community, as used here, is understood as a set of heterogeneous individuals, institutions, and associations interacting and sharing social, economic, geographical, or sentimental characteristics. It is defined by a sense of belonging and shared perspective [ 18 ]. In analysing health improvement from community participation in research, a report by the National Academies of Sciences, Engineering, and Medicine (U.S.) concluded that projects with community power groups must put issues of power, race, and inequality at the centre of the discussion; otherwise, it is easy for projects to move in tactical and not necessarily enriching directions [ 19 ]. In fact, the research model that has been most frequently applied to address health inequalities is Community-Based Participatory Research [ 20 , 21 ], which does so by addressing power imbalances through equitable community engagement [ 22 , 23 ].

1.2. Community-Based Participatory Research

Israel et al. defined Community-Based Research as focusing on social, structural, and physical environmental inequities through the active involvement of community members, organizational representatives, and researchers in all aspects of the research process [ 24 ]. Partners contribute their expertise to enhance the understanding of a given phenomenon and integrate the knowledge gained with action to benefit the community involved. Compared to other models of community engagement that have successfully addressed health disparities, Community-Based Participatory Research has three components that are considered key drivers of success: engagement of community partners at all stages of research development, including the dissemination of findings; facilitating knowledge exchange between the community and academic partners; and achieving a balance between research and action [ 22 , 23 ]. The possibilities, realities, and challenges of this research approach were reviewed by Wallerstein and Duran, who examined the challenges of achieving a truly balanced researcher–community relationship for issues such as power, privilege, participation, community consent, racial and/or ethnic discrimination, and the role of research in social change [ 25 ]. This last aspect is one of the ongoing challenges in public health: how this transformative research paradigm influences practice and policy to reduce disparities. The same authors also investigated the barriers and limitations in intervention and implementation sciences, and concluded that Community-Based Participatory Research has an important role in expanding the reach of translational intervention and implementation sciences to influence practices and policies for eliminating disparities [ 25 ]. In this regard, attention is given to the idea of “co-creation”, that is, developing and implementing actions or interventions in partnership with the community. Several researchers have considered its potential for improving the implementation of community-involved actions aimed at changing the social determinants of health [ 26 , 27 ]. The idea of co-creation, as a way of getting actions implemented through collaboration, provides an additional way to achieve a public health policy and practice that is closer to community priorities and helps to overcome the implementation challenges [ 27 ].

1.3. Cocreation and Public Health

The term “co-creation” finds its origin in the public sector and public management [ 28 ]. Voorberg at al. have clarified its meaning by making a difference between three types of co-creation: citizens as co-implementers, co-designers, or co-initiators. In their review, they found that co-creation/co-production is a practice to be found in numerous policy sectors, but predominantly in health care and education. In the health field, co-creation was from the outset related to the improvement of the design of consumer goods and services to adapt better to the expectations of end-users [ 28 ]. Hence, its diffusion in the design of health actions or technologies aimed at specific individuals has been relatively wide. In the field of public health, there are also examples closely related to more individual actions and service delivery (hand washing, screening, etc.). However, its application in more complex public health programs has not been as frequent, as it is not only a matter of adapting the intervention to the end-user; the end-users also take part in all stages of intervention design and implementation. They are both the target population and active stakeholders, who initiate population-level changes in health through their effective involvement. Assuming the complexity inherent within health, wellbeing, and equity within a socioecological framework of complex adaptive systems, Von Heimburg and Cluley explored existing links between co-creation and Health Promotion to outline the potential to integrate these approaches in public value-creation [ 26 ]. They stated that a shared moral ethos renders co-creation an appropriate approach for complexity-informed Health Promotion practice, and to nurture further development of Health Equity in All Policies. Yet, they noted that some conceptualizations of co-creation can lead to increasing inequity through disparity in participation. Addressing questions of power and decision-making about who participates, how they participate, and to what extent in the creation of public health policy is one of the key issues when examining the potential role of co-creation in contributing to the achievement of public health goals [ 26 , 29 ].

As co-creation is becoming a core principle of public sector reform, it is advisable to have an overview of experiences that, in practice, have applied co-creation to generate and implement public health actions that incorporate the principle of equity. The purpose of this research is to review these experiences to contrast what methodologies have been used, how the participation of citizens and communities has been articulated, and what effects on health and equity have been observed.

2. Materials and Methods

This scoping review was developed following the Arksey and O’Malley methodological framework, in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist. We specifically searched for articles examining co-created public health actions based on equity. As there is controversy about the conceptualisation of co-creation and as it is an emerging issue in public health research, a scoping review would be the best approach to ‘map’ the relevant literature in the field of interest. The scoping review was carried out to answer the research question: “What methods have been used in co-created public health actions that incorporate the principle of equity, how does community or citizen participation tend to be articulated, and what effects on health and equity have been observed?”.

2.1. Search Strategy

We performed a search for scientific articles published in peer-reviewed journals, in English, French, Portuguese, or Spanish, from the first available date until the last search on the first of June 2021 in the Web of Science, EBSCO, and ProQuest. Articles published electronically up to this date were included, although their final publication date may have been later. We acknowledge that some potentially relevant papers in other languages, such as German or Japanese, have not been included. The research group identified potential keywords by brainstorming terms closely linked to our research question. Specifically, we considered terms linked to co-creation (such as citizen science, human centered design, community networks, integrated governance), public health (such as health policies, health promotion, health interventions), and equity (such as equality, inequity, inequality).

The final search strategy was developed for use in the Web of Science, and was structured in three parts: it includes a part for participatory concepts, such as “co-creation or open science”; a part for institutional actions, such as “Public Health or Public policies”; and a part for equity, with terms such as “Inequity or Disparity”. Then the search strategy was adjusted for each database ( Appendix A ).

2.2. Identifying Relevant Studies

We included reports, published in peer-reviewed journals or grey literature, that described co-created public health actions which address health equity. That is, actions (programmes and policies) that have been developed through collaboration with different stakeholders (including citizens) in the ideation, prioritization, planning, implementation, and/or evaluation of public health actions to improve health and achieve health equity. We considered both studies/experiences which describe original public health actions designed through co-creation, and studies reporting implemented public health actions that had been previously derived from a co-creation process. Only actions that included the participation of citizens were included; although, we accepted community leaders as the spokespersons/representatives of the citizens. Systematic reviews were also utilized if they included papers that fulfilled the inclusion criteria.

We excluded theoretical studies with no concrete action and those aimed at describing self-care (e.g., co-created apps for individual management of health problems or individual educational interventions). We also excluded studies in which population participation was limited to surveying users of public health interventions, to improve and fine-tune the instruments/actions or to evaluate the effectiveness of programs.

2.3. Study Selection

Both the specificity of the terms used in the search strategy and the inclusion criteria were tested by applying them independently to two consecutive series of twenty titles; abstracts followed by group discussion. Before starting the selection of articles, duplicates between the databases were excluded. All authors participated in the study selection. In the first step, two authors independently reviewed the title and abstract of each potential reference (see flow diagram in Figure 1 ). Uncertainties and disagreements were resolved by reviewing the full text of the study and by discussion and arbitration with a third author.

Flow diagram of search and selection.

2.4. Data Extraction and Synthesis

We extracted the data from the studies in duplicate, and any discrepancies between the two extractions were resolved by a third researcher. We grouped the information extracted from the selected articles into three areas.

The first consists of the basic information of the article, as well as the location of the fieldwork, the objective of the co-creation action, and the health issue addressed. We also noted the theoretical model applied to develop the co-created action, as referred to by the authors: Community-Based Participatory Research (CBPR) or any other interchangeable term used, such as Community-Based Participatory Service or Community-Based Participatory Action Research, Participatory Action Research (PAR), and Experienced-Based Co-design (EBCD).

The second area of interest relates to the employed methodology, the equity approaches, and the community participation in the different phases of the action. We defined 5 categories to describe the methods: Group discussions; Workshops; Interviews; Observation; or Surveys. We considered group discussions to be any facilitated meeting with multiple participants, including formal focus groups. They may include structured questions, but lean towards a more natural group conversation on an underlying subject. To be considered a workshop, the facilitated meetings with multiple participants must include activities to develop, learn and/or improve skills, or to undertake a practical action. Actions may include reviewing collated epidemiological information, making an inventory or map of all relevant issues (resources, threats etc.), and may be exclusively dedicated to the development of a specific participatory methodology such as photovoice or storytelling. We used standard definitions for interviews, observation, and surveys [ 30 ]. Each action could include different methodologies. Regarding the approach to equity in the projects reviewed, we defined four categories: economic vulnerability (improving the economy of people in low-income situations); racial discrimination (improving the situation of people who suffer discrimination due to their community origin, ethnicity, and similar); gender discrimination (improving the situation of people who suffer discrimination due to their sex or gender identity); and other social discrimination (improving the situation of marginalised communities and/or people who suffer discrimination other than racial or gender discrimination). Regarding community participation, we considered community to be a specific group of people who: usually live in a defined geographical area; share the same culture, values, and norms; and organise themselves into a social structure, according to the type of relationships that the community has developed over time. Its members are aware of their identity as a group and share common needs and a commitment to meeting them. We defined the following phases in which community can participate: agenda setting (selection and identification of issues to work on); design (deciding a specific group of actions); implementation (carrying out the activities); and evaluation (the process of measuring the success of the implemented actions). Due to the inclusive nature of our review question, not all studies had 4 phases.

Finally, we extracted information on the types of actors that participated in the actions besides the community. We considered promotors of the action as the people who conceived the initiative and classified them into 4 categories: academic (universities, schools, and educational institutions); governmental (political organizations such as councils, town halls, or politicians); healthcare institutions (hospitals, clinics, and health departments); and private organizations (businesses, foundations). Some actions also included other stakeholders, and these were also classified into 4 categories: Public Institutions (schools, universities, hospitals, town halls, or similar); Civil society and NGOs (groups of people who share a common interest, typically addressing a social or political issue, and create an organization to defend it; this includes formal non-profit organizations that operate independently of government); and private organizations (for-profit businesses, including their associated foundations).

After removing duplicates, we screened 4331 abstracts and titles, of which 139 potentially met the inclusion criteria and were selected for full-text review. We rejected a further 108 articles that did not fully meet our inclusion criteria; 31 studies were included in the final review ( Figure 1 ).

Reviewed papers were published between 1995 and 2022 and the most frequent year of publication was 2020. More than half of the analysed projects were undertaken in North America (n = 17, 55%), while there were five in European countries (16%), four in Australasia (13%), four in Africa (13%) and one in Central America (3%, Mexico). CBPR was the theoretical framework most referred to by the authors (n = 12, 38%). Other frequently referred to frameworks included PAR and EBCD (n = 7, 22%). The studies described co-created public health actions with a variety of objectives ( Table 1 ) and addressed a broad range of health issues ( Table 2 ). Ten actions (32%) addressed health disparities in a more general sense, while others addressed specific health problems (such as cancer, diabetes, suicide, and gender violence), environmental issues (such as air pollution, food security, and climate change), and behavioural determinants (such as tobacco use, alcohol, and physical activity).

Country, objective, promotors, and other stakeholders involved in the 31 co-created public health actions based on equity reviewed.

Participatory methodology, equity focus, and community participation in 31 co-created public health actions reviewed.

* In the community participation section of the table, grey shaded cells show the phases that were included in the project schedule. As such, if a cell is white it means that this phase was not included in the study report. In grey cells, only cells that are indicated with a check included the community in the corresponding phase.

The majority of the studies used workshops to develop their co-created public health actions (n = 27, 87%), while discussion groups were used in 20 studies (64%) and interviews in 16 (51%). Observation and surveys were used less frequently (n = 8, 25%, respectively). Regarding the different activities and methods used in the workshops, eight studies (29%) used workshops to develop photovoice (a participatory methodology that includes participants taking and selecting photos about a subject to reflect and explore issues, opinions, and ideas). Another eight (29%) developed mapping group activities, understood as the systematic identification of all relevant issues (such as resources or threats) by the participants, using maps (conceptual or otherwise) or by listing them as an inventory. Four studies (14%) used workshops to undertake storytelling, where stories were developed by participants to illustrate the relevant elements of an issue and encourage reflection. Other activities developed by workshops included theatre and the creation of a school newspaper ( Table 2 ).

The most frequent way to incorporate equity into action was to address economic vulnerabilities (n = 20, 64%), followed by racial discrimination (n = 18, 58%). Other social discrimination (such as people in a vulnerable situations due to drug abuse) and gender discrimination were less frequent (n = 3, 9% and n = 2, 6%, respectively). We found studies which addressed economic vulnerability together with other issues such as racial or social discrimination (n = 11, 35%). There were no studies that addressed more than one type of discrimination (social, racial, or gender; Table 2 ).

Not all studies included all four phases of the co-creation process in their schedule (agenda setting, design, implementation, and evaluation). The agenda setting phase was included in all 31 studies; although, seven (22%) studies did not include the community in this part. Thirty studies (96%) included the design phase, of which one (3%) did not include the community. Twenty-six studies (83%) included implementation of the action that was co-created, all involving the community. Sixteen studies (51%) included an evaluation of the co-creation in the report, of which 12 (75%) included the community. It was also found that the evaluation phase was normally reduced to community feedback or, in the rest of the studies (n = 14, 49%), scrapped from the process ( Table 2 ).

Table 2 describes the types of organizations that appear to have promoted the action, and the other stakeholders involved. We found that all the projects were launched with academic institutions as the principal promotor, followed by healthcare institutions (n = 19, 61%) or governmental departments (n = 11, 35%) which normally appear as active supporters or data providers. Private organizations appear promoting co-creation just in three studies (9%). When analysing the participation of other stakeholders, we found that social organizations (understood as civil associations and volunteer organizations) appear as the principal interested group in co-created public health actions (n = 14, 45%), followed by private businesses (n = 8, 25%), a category which included the foundations of private companies such as Kellogg’s. Four actions (12%) also included public institutions as stakeholders.

4. Discussion

Our scoping review shows that various health issues have been addressed using participatory methods to cocreate public health actions that incorporate the principle of equity. However, despite the literature citing cocreation as an effective method for reducing health inequalities, the findings from this scoping review show the community was rarely involved in the entire cycle of decision making, which may limit the social change intended by the action. Furthermore, the scope of different equity issues that were approached was somewhat limited. Most of the studies addressed economic vulnerabilities, working specifically in low-income neighbourhoods or communities. There appears to be room to deepen the knowledge base on co-created public health actions to address other equity issues, particularly those addressing different forms of discrimination.

Most of the actions reviewed were launched in high-income countries, most frequently the United States. This can be explained by the function of the research industry, which is commonly concentrated where the economic and academic capacity, followed by governmental support, allows the development and publishing of research. It would not be correct to think that low-income countries have no equity-focused, participative initiatives in public health because there are no papers published. Furthermore, in our analysis of the institutions that promoted the action, we can see that academic institutions predominate; these stakeholders are, again, more likely to publish the research in peer-reviewed journals. It is possible that other actions that would have met our inclusion criteria have been carried out by non-academic institutions, but have not been detected in our search strategy because they are unpublished.

According to the literature, participatory methods are commonly used to address specific health disparities and inequities [ 20 , 62 ]. Cocreation is frequently implemented in deprived communities, and it is an appropriate instrument for meeting public health objectives [ 28 , 29 ]. In line with the critiques given by Vargas et al., we agree that projects tend to focus more on the implementation of the actions, rather than the processes used to elicit community participation in the cocreation process [ 63 ]. Harnessing the full power of co-created public health initiatives to tackle health inequalities will require community members to be actively and equitably involved in all phases of the action. Participation in the earlier phases of the action may be particularly important to achieve meaningful impacts in equity, because participants can define the issues that are important to them and improve the visibility and understanding of health disparities that may otherwise be overlooked by stakeholders. Regarding the models cited by the authors, CBPR appears as the most-used in studied actions, which is consistent with the literature that presents CBPR as the most adequate model to address health disparities [ 25 ]. Even though CBPR proposes the engagement of communities to promote social changes that benefit those communities, we found the community was rarely involved in the entire cycle of decision making [ 20 ]. In our scoping review, only six actions included the community in the whole decision process. Of those, Ali et al. discussed that it was hard to maintain the contact and interest of participants; Newman et al. found difficulties with community involvement in the identification of priorities, which may not be uniform and could affect the selection process. According to the literature, power may remain concentrated in agents within academic settings, as well as economic and political institutions, whereas socially excluded individuals are powerless [ 64 ].

In accordance with Cowdell et al. [ 65 ], the community usually participate more in activities like providing and discussing information, rather than in data analysis or dissemination. Our scoping showed that communities were normally engaged in the practical phases of the decision-making process (design and implementation), whilst in agenda setting and evaluation the participation decreased remarkably. This may suggest that the community tends to be included in processes that do not need a high qualification or a technical profile.

According to Halvorsrud et al. [ 62 ], there is a lack of validated tools to evaluate the process of co-creation. This may explain why many of the described actions failed to include the evaluation phase in their studies. However, this fact should be considered in light of the evidence shown by Marsillo et al., who explain that co-creation is normally based on “Hic and Nunc” approaches and is scarcely designed with longitudinal or mixed methods that compare the initial situation and the outcome [ 66 ]. In the same sense, the qualitative nature of co-creation makes the evaluation a complex field.

Group meetings and activities have been pointed out as a fundamental part of the participatory process to communicate with the community and to join different points of view. Furthermore, it is a useful way to promote collaboration between participants, incorporate different perspectives, and guarantee community change [ 21 ]. We found that group meetings were an essential methodology used in most of the public health actions reviewed. The actions addressed equity in several environments including economical inequities, by focusing on low-income groups, and discrimination, by focusing efforts on specific social groups. Contrary to the literature, which shows co-creation is limited when it comes to working with ethnic minorities [ 36 ], we found that over half of the actions were developed with minority ethnic groups.

This review aimed to analyse equity-focused public health actions that have been co-developed with communities. Although using community involvement to reduce social inequalities in health is not a widely shared assumption, there is evidence available to support the idea. O’Mara-Eves at al. [ 9 ] evaluated the effectiveness of public health interventions that engage the community and found that public health interventions using community engagement strategies for disadvantaged groups were effective in terms of health behaviours, health consequences, health behaviour self-efficacy, and perceived social support. Through participation, the community could set, facilitate, design, and implement actions to change their situation. Sandra Carlisle postulate that, although community awareness is a fundamental part of social development, awareness is not the only fundamental part of social change [ 21 ]. There is an important function played by researchers, which consists of supporting changes and actions.

Our scoping review aimed to evidence the necessity of developing public health actions through the community as a synonym for inclusion and evolution in public health policymaking, especially with collectives that suffer discrimination. We decided to start by contextualizing the state of equity actions based on co-creation. We found evidence of the practice being used as a means of connecting with the community for research or evaluation processes in this field, although significant gaps remain.

5. Conclusions

Our review demonstrates that co-creation is a growing field of inquiry to address health inequity. This may be motivated by the importance that some international organizations have placed on co-creation, in previous years. For example, the European Union in its Horizon program defines co-creation as a guarantee of the growth of citizen science and innovation in providing public services. We found that co-creation can be undertaken with a number of different traditional, participatory methodologies such as CBPR or PAR.

It is important to consider what has already been done to understand what is effective when designing new initiatives to empower communities. Our study is helpful in this sense because it identified experiences in the public health area which aimed to address health disparities through community participation. These experiences include several examples of how scientific evidence can be adapted and implemented by implicating and encouraging communities. This study shows that health promotion, as the public health definition says, is possible through the whole population’s effort.

Search Equation Used in Each Bibliographic Database to Identify Articles Examining Co-Created Public Health Actions Based on Equity.

Funding Statement

This research received no external funding.

Author Contributions

Conceptualisation, L.A.P., I.H.-A., M.G.-M.T., M.P.-V. and E.C.-R.; methodology, S.M.-G., L.A.P. and E.C.-R.; formal analysis, S.M.-G., L.A.P., I.H.-A., M.G.-M.T., M.P.-V. and E.C.-R.; investigation, S.M.-G., L.A.P. and E.C.-R.; writing—original draft preparation, S.M.-G., L.A.P., I.H.-A. and E.C.-R.; writing—review and editing, S.M.-G., L.A.P., I.H.-A., M.G.-M.T., M.P.-V. and E.C.-R.; visualisation, S.M.-G.; supervision, L.A.P. and E.C.-R. All authors have read and agreed to the published version of the manuscript.

Conflicts of Interest

The authors declare no conflict of interest.

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Oncologists' meetings with drug reps don't help cancer patients live longer

Sydney Lupkin

Drug companies often do one-on-one outreach to doctors. A new study finds these meetings with drug reps lead to more prescriptions for cancer patients, but not longer survival. Chris Hondros/Getty Images hide caption

Drug companies often do one-on-one outreach to doctors. A new study finds these meetings with drug reps lead to more prescriptions for cancer patients, but not longer survival.

Pharmaceutical company reps have been visiting doctors for decades to tell them about the latest drugs. But how does the practice affect patients? A group of economists tried to answer that question.

When drug company reps visit doctors, it usually includes lunch or dinner and a conversation about a new drug. These direct-to-physician marketing interactions are tracked as payments in a public database, and a new study shows the meetings work. That is, doctors prescribe about five percent more oncology drugs following a visit from a pharmaceutical representative, according to the new study published by the National Bureau of Economic Research this month.

But the researchers also found that the practice doesn't make cancer patients live longer.

"It does not seem that this payment induces physicians to switch to drugs with a mortality benefit relative to the drug the patient would have gotten otherwise," says study author Colleen Carey , an assistant professor of economics and public policy at Cornell University.

For their research, she and her colleagues used Medicare claims data and the Open Payments database , which tracks drug company payments to doctors.

While the patients being prescribed these new cancer drugs didn't live longer, Carey also points out that they didn't live shorter lives either. It was about equal.

The pharmaceutical industry trade group, which is known as PhRMA, has a code of conduct for how sales reps should interact with doctors. The code was most recently updated in 2022, says Jocelyn Ulrich, the group's vice president of policy and research .

"We're ensuring that there is a constant attention from the industry and ensuring that these are very meaningful and important interactions and that they're compliant," she explains.

The code says that if drug reps are buying doctors a meal, it must be modest and can't be part of an entertainment or recreational event. The goal should be education.

Ulrich also points out that cancer deaths in the U.S. have declined by 33 percent since the 1990s , and new medicines are a part of that.

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Emanuelle M. Dias, PhD, MPH, CPH. (Photo courtesy of Dias)

From tragedy to triumph: One alum’s path to the U.S. Army

• Liz Bannon, College of Public Health
• April 19, 2024
• Alumni & Development

USF College of Public Health (COPH) alumna Emanuelle Dias is a proud native Floridian who grew up in South Florida. When she was 14 years old, her mother passed away from breast cancer which inspired her healing journey through education, research and cancer prevention. 

Dias began her education at the University of Florida as a pre-med student. She was halfway through her first year when she started exploring different paths. “I took an introduction to health disparities class and knew in that moment it was exactly what I wanted to have a career in,” she said.

After graduating, Dias decided to pursue her master of public health at the COPH. “I knew that it was the number one program in the state and I would be able to work with my mentor, former COPH professor Dr. Alicia Best,” Dias said. “We had very similar backgrounds, both losing our mothers to breast cancer, and that was part of our public health journey that connected us. It just felt right to be at USF.”

Dias said one of the most memorable experiences she had was in March of 2019 with the International Health Service Collaborative , a group of USF Health students, faculty and professionals focused on promoting sustainable health in underserved communities abroad.

“We went on a medical mission trip to Jamaica for a week during spring break,” she said. “It was incredible because one of the students was from Jamaica and helped make many connections and contacts there for us. We were able to squeeze in some fun time too.”

Dias, pictured front row and second from the left, conducted a one-week medical mission trip to Montego Bay, Jamaica in March 2019 with the International Health Service Collaboration. (Photo courtesy of Dias)

Dias points to two people who inspired her during her time at the COPH.

“ Dr. Dinorah "Dina" Martinez Tyson embodies being a community-engaged researcher. Her cancer survivorship camp motivated and inspired me to be the type of researcher that I'm still working on being. The kind of public health professional that I strive to be,” Dias said. “Then, Dr. Mahmooda Pasha believed in me and encouraged me to take on a PhD.” 

Dias also participated in a leadership training that promoted Latino researchers to get their PhD's in public health. “After that, I knew I wanted to do research in the cancer prevention space,” she said. Dias became involved with the Florida Prevention Research Center with Dr. Pasha and Professor Dr. Claudia Parvanta . “The center allowed me to build strong research experience, work on presentations and publications and allowed me to become a competitive applicant going into a PhD program,” Dias said. Dias was accepted to the University of Texas Health Science Center in Houston for her PhD where she is currently residing.  “Houston is very much a cancer prevention research hub,” Dias said. “It aligned with my journey and so I grew my research skills, solidified myself as a scientist and was able to expand and become a research professional.” 

During her PhD program, Dias said she was funded by a National Cancer Institute predoctoral fellowship, which allowed her to focus on her dissertation.

Dias graduated in December 2023 with a PhD in public health, with a focus in health promotion and behavioral sciences.

“After I graduated, I had to decide what was next,” she said. “I could have gone the typical route and stayed in academia and go through with the postdoctoral fellowship, but I decided to leave to explore some other sectors.”

In January 2024, Dias was offered a position as an Oak Ridge Institute for Science and Education fellow with the U.S. Department of the Army.

“This was something I honestly never envisioned myself doing. No one in my family has been enlisted and I don’t know a lot of Army folks, but it has been a really rewarding experience. I’ve even visited Washington, D.C., and the Pentagon through my work!”

D ias, pictured front row on the far left, in the Pentagon Library and Conference Center, March 2024 with the Integrated Prevention Advisory Group, the U.S. Army's new primary prevention workforce. (Photo courtesy of Dias)

“I'm part of an integrated prevention division,” Dias said. “We are working on preventing harmful behaviors including sexual assault, suicide, substance misuse, child mistreatment and domestic partnership violence.” “I’m working at the strategic level to build this workforce,” Dias said. “This infrastructure is solidifying a research agenda. As this has never existed, we're starting from scratch. I’ve been working on literature review and scanning strategic initiatives at the Centers for Disease Control and Prevention and other government organizations to align with our organization.” For the future, Dias says she will most likely stay in the government sector but she’s also interested in going into the private sector, like a research institution. No matter where she ends up, she says the journey she started after her mom’s passing feels complete.

“There's so much opportunity and public health continues to grow. The U.S. Army is developing a public health infrastructure, and I know we will continue to see these various roles across different sectors.”

Dias presented a poster exploring the association between maternal and paternal characteristics and the risk of colorectal cancer in adult offspring at the American Society of Preventive Oncology in March 2023 in San Diego, California. (Photo courtesy of Dias)

Fast Five What did you dream of becoming when you were young? I wanted to be a medical doctor. Where would we find you on the weekend? I am very active, so I love weightlifting and yoga.

What is the last book you read? “Everything I Know About Love” by Dolly Alderton. What superpower would you like to have? Teleportation, so I can get to places quickly.

What is your all-time favorite movie? “The Proposal” with Sandra Bullock. It’s one of the last movies that I watched with my mom before she passed.

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Welcome to the USF COPH news page. Our marketing and communications team is entrusted with storytelling. Through written stories, photography, video and social media we highlight alumni, faculty, staff and students who are committed to passionately solving problems and creating conditions that allow every person the universal right to health and well-being. These are our stories.