Using community-based participatory research to address health disparities

Wallerstein, N., Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312-23.

This article focuses on the challenges that arise out of the relationship between the community and researchers in the process of community-based participatory research especially in terms of power and consent. The authors argue that community-based participatory research is not simply a community outreach strategy but represents a systematic effort to incorporate community participation and decision making, local theories and community practices into the process of research. Challenges emerging using this methodology, which includes community consent, culturally bound knowledge and the level of participation throughout the study, are described in the article. Ways through which community-based participatory research can be used as a force of social change are also included with examples from impact created in the field of health. Finally the article recommends ways in which community-based participatory research can be enhanced both the academia and for the community.

Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

Cordner, A., Ciplet, D., Brown, P., & Morello-Frosch, R. (2012). Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building. Social Movement Studies, 11 (2), 161–176.

This paper is about the ethical concerns that emerge in community-engaged research drawing the author’s’ experiences in doing this kind of research in the field of health. The advantages that result from research done based on reflexive research ethics are mentioned in the article. Reflexive research ethics is a concept discussed in the paper which includes ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. The question of ethical guidelines in times of uncertainty especially when researchers are involved in research with social movements arises and thus the need for reflexive research ethics as a method that allows the researcher to self-consciously evaluate her role in the research in relation to community participants. The impacts of the research process on social movement goals as well as the impacts of the social movement goals on the research process are discussed.

Abstract: Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others’ research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars.

Photovoice ethics: Perspectives from Flint photovoice

Wang, C. C., & Redwood-Jones, Y. A. (2001). Photovoice ethics: Perspectives from Flint photovoice. Health education & behavior, 28(5), 560-572.

Abstract: Photovoice is a participatory health promotion strategy in which people use cameras to document their health and work realities. As participants engage in a group process of critical reflection, they may advocate for change in their communities by using the power of their images and stories to communicate with policy makers. In public health initiatives from China to California, community people have used photovoice to carry out participatory needs assessment, conduct participatory evaluation, and reach policy makers to improve community health. This article begins to address ethical issues raised by the use of photovoice: the potential for invasion of privacy and how that may be prevented; issues in recruitment, representation, participation, and advocacy; and specific methodological techniques that should be used to minimize participants’ risks and to maximize benefits. The authors describe lessons learned from the large-scale Flint Photovoice involving youth, adults, and policy makers.

Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment

Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health education & behavior, 24(3), 369-387.

Abstract: Photovoice is a process by which people can identify, represent, and enhance their community through a specific photographic technique. As a practice based in the production of knowledge, photovoice has three main goals: (1) to enable people to record and reflect their community’s strengths and concerns, (2) to promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and (3) to reach policymakers. Applying photovoice to public health promotion, the authors describe the methodology and analyze its value for participatory needs assessment. They discuss the development of the photovoice concept, advantages and disadvantages, key elements, participatory analysis, materials and resources, and implications for practice.

Community‐Based Participatory Research: Assessing the Evidence

Viswanathan, M., A. Ammerman, E. Eng, G. Garlehner, K.N. Lohr, D. Griffith, S. Rhodes, et al. 2004. “Community‐Based Participatory Research: Assessing the Evidence,” August.

Community-based Participatory Research (CBPR) is a participatory approach to research that is meant to increase the value of studies for both researchers and the communities being studied. When done properly, CBPR creates bridges between scientist and communities through the use of shared knowledge and valuable experiences. The advantages of using this approach in research are explained. This is a summary of the work commissioned by the Agency for Healthcare Research and Quality (AHRQ) to do a review of the community-based participatory research and its role in the improvement of community health. Four key questions were identified to do this review. They included finding out the definition of community-based participatory research, methods of implementation, the intended outcomes of this approach, and the criteria that should be used to review community-based participatory approach in grant proposals. The report then discusses the answers to these questions based on the research done with community research partners, academic researchers and research financiers and through the use of different data sources. Recommendations for scientists planning to use community-based participatory approach in the future are given such as creating a balance between research methodologies and community collaboration.

Participatory Rural Appraisal (PRA): Analysis of Experience

Chambers, R. (1994) “Participatory Rural Appraisal (PRA): Analysis of Experience”. World Development, vol 22, no 9, pp. 1253–1268.

The more significant principles of Participatory Rural Appraisal (PRA) concern the behavior and attitudes of outsider facilitators, including not rushing, “handing over the stick,” and being self-critically aware. The power and popularity of PRA are partly explained by the unexpected analytical abilities of local people when catalyzed by relaxed rapport, and expressed through sequences of participatory and especially visual methods. Evidence to date shows high validity and reliability of information shared by local people through PRA compared with data from more traditional methods. Explanations include reversals and shifts of emphasis: from etic to emic, closed to open, individual to group, verbal to visual, and measuring to comparing; and from extracting information to empowering local analysts. Includes sections on community surveys and census. 

Public participation in environmental assessment and decision making

Stern, P. C., & Dietz, T. (Eds.). (2008). Public participation in environmental assessment and decision making. National Academies Press.
Involves using different participants, scholars, practitioners and people who are not specialists, in different workshops during the study to conduct environmental assessment. The merits of using public engagement as an effective method of addressing existing environmental problems are also addressed. The project focuses on the advantages and disadvantages of participation in research and how this can influence future research.  How to integrate science into participation in environmental assessment is addressed further into the research. Four recommendations when carrying out public participation practice are discussed in detail. One of them is what to consider when choosing a best-process practice in public participation which includes analyzing the context, deciding on the techniques to use depending on the context, monitoring the process and changing the techniques as required from arising problems.

Participatory Mapping to negotiate indigenous knowledge used to assess environmental risk

Robinson, C. J., Maclean, K., Hill, R., Bock, E., & Rist, P. (2016). Participatory mapping to negotiate indigenous knowledge used to assess environmental risk. Sustainability Science, 11(1), 115-126.

Covers a method where participants, Aboriginal People from Northern Australia, painted and drew maps of their values, knowledge and management aspirations for water and native vegetation. The article describes a participatory research methodology focusing on two case studies to show how indigenous people can share knowledge in environmental risk assessment and management responses. To design an effective methodology the article first focuses on the definitions of indigenous rights and knowledge. A co-research approach between the leaders of the indigenous people and scientists was used in various projects where the community leaders worked with the researchers to select participants and design the participatory mapping workshops. In these workshops the people came up with participatory maps that were effective in designing knowledge partnerships for given environmental issues. During this mapping process the complexities of different indigenous knowledge in the region emerged; a challenge in participatory action research as well as decolonized methodologies approach in research.
Ethics: the article focuses on how to develop ways of knowledge sharing, debating and co-producing while maintaining the integrity of each knowledge system and the respective responsibilities of the individuals involved in this process.

A Rights-Based Approach to Research: Assessing the Right to Water in Haiti

Satterthwaite, Margaret L.  & Amanda M. Klasing, A Rights-Based Approach to Research: Assessing the Right to Water in Haiti, in RIGHTS-BASED APPROACHES TO PUBLIC HEALTH 143 (Elvira Beracochea et al eds., 2011)

The book focuses on solutions in public health problems that are rights-based. The human rights framework as described in the book helps public health actors know when to intervene, device methods of intervention, and measure the impact of their intervention strategies. The book encourages public health practitioners to be advocates of human rights in the course of their work. It also addresses the challenges that such practitioners face as they promote human rights in their work. It also includes tools and case studies that those interested in implementing a rights-based, evidence-based approach to public health problems can use. The book also includes a section on how rights-based approaches can be used in cases of high health disparities and how they can be used to shape policy in health care reform.

Public health research and lay knowledge

Popay, Jennifer and Gareth Williams. 1996. “Public health research and lay knowledge.” Social Science and Medicine 42(5): 759-68.

: drawing from existing research on lay knowledge in public health and how such knowledge is formed and how it compares to scientific knowledge in public health.

The article focuses on lay knowledge about health and illness. It also stresses the importance of incorporating this lay knowledge constructed by lay people into public health research. With the changing nature in public health research and situations, there’s need to connect the social and biological dimensions of human health. Though not without limitations, lay knowledge has a role to play in the public health discourse argues the author. The paper also addresses some issues that arise with the integration of science and lay knowledge such as the implications on methodology while conducting research and how power relations affect the methods that are chosen in research. The author also looks at the possible reasons for not giving much importance to the lay knowledge one of which is that women are major participants in lay action for health. Finally the paper argues that a more pluralistic nature of methodology is needed as well as developing research processes that make lay expertise and its potential visible.