Trust, Conflict, and Engagement in Occupational Health: North American Epidemiologists Conduct Occupational Study in Communities Affected by Chronic Kidney Disease of Unknown Origin (CKDu).

PURPOSE OF REVIEW: Science has been used as a tool of colonialism, and aspects of science privilege researchers in the global North (USA and Europe). The environmental justice and worker health movements in the USA and globally have influenced aspects of how occupational and environmental health research is conceived and conducted so that it is more equitable. This review provides a case example of research in the area of chronic kidney disease of unknown origin (CKDu). RECENT FINDINGS: In the present work, the author describes aspects of community-based participatory research and anti-colonial research that influence a current occupational epidemiology study of CKDu in Mesoamerica among workers in agriculture and non-agricultural industries. The research includes investigators from numerous countries in the global North and South and funding from the US government and corporations. The role of industry in science and the misuse of science by corporate interests remain substantial threats to research integrity. The ability of researchers to navigate potentially conflicting interests with industry and workers, and establish trust within and outside the scientific community, is essential for sustained engagement in longitudinal studies. Trust is about human relationships. It takes time and effort to build and is essential for creating equitable, empowering research relationships.

Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care.

Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.

Conversations about Community-Based Participatory Research and Trust: "We Are Explorers Together".

BACKGROUND: This paper describes a study circle and a series of conversations with a community partner that were part of a project that grew out of a partnership between Native People for Cancer Control, a research program at the University of Washington, and five tribes in Washington, Idaho, and Montana. METHODS: Researchers undertook a study circle to build bioethics capacity and, specifically, to better understand the values that should guide community-based participatory research (CBPR). RESULTS: Study circle members identified five action guiding principles for CBPR: respect tribal sovereignty, promote transparency, hear community priorities, learn from each other, and take collective action. This activity led to a series of conversations between researchers and the chair of Shoalwater Bay Tribe, Charlene Nelson. Nelson suggests the metaphor of "exploration" as a way to think about what good CBPR looks like. Exploration reframes the research enterprise, from a systematic scientific inquiry conducted by academic investigators to a less predictable activity that reaches into the uncontrolled and unknown. We used this metaphor to explore three features of CBPR we believe to be essential to building trust: ongoing commitment and time, direct collaboration with community members and new learning for all involved, and candid and cautious action. CONCLUSIONS: The CBPR literature underscores many of these same points; however, we found the metaphorical language offered by Nelson enriched their meaning and deepened study circle members' appreciation of them.

Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm.

PROBLEM: Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to "sins of omission," which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence. PURPOSE OF ARTICLE: To describe "sins of omission" and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them. KEY POINTS: CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes. CONCLUSIONS: By working with community members as partners, we expand the concept of beneficence to include "community beneficence," thus reducing the probability of "sins of omission."

Talking About The Smokes: a large-scale, community-based participatory research project.

OBJECTIVE: To describe the Talking About The Smokes (TATS) project according to the World Health Organization guiding principles for conducting community-based participatory research (PR) involving indigenous peoples, to assist others planning large-scale PR projects. DESIGN, SETTING AND PARTICIPANTS: The TATS project was initiated in Australia in 2010 as part of the International Tobacco Control Policy Evaluation Project, and surveyed a representative sample of 2522 Aboriginal and Torres Strait Islander adults to assess the impact of tobacco control policies. The PR process of the TATS project, which aimed to build partnerships to create equitable conditions for knowledge production, was mapped and summarised onto a framework adapted from the WHO principles. MAIN OUTCOME MEASURES: Processes describing consultation and approval, partnerships and research agreements, communication, funding, ethics and consent, data and benefits of the research. RESULTS: The TATS project involved baseline and follow-up surveys conducted in 34 Aboriginal community-controlled health services and one Torres Strait community. Consistent with the WHO PR principles, the TATS project built on community priorities and strengths through strategic partnerships from project inception, and demonstrated the value of research agreements and trusting relationships to foster shared decision making, capacity building and a commitment to Indigenous data ownership. CONCLUSIONS: Community-based PR methodology, by definition, needs adaptation to local settings and priorities. The TATS project demonstrates that large-scale research can be participatory, with strong Indigenous community engagement and benefits.

From patient to participant: enhancing the validity and ethics of cancer research through participatory research.

Participatory health research involves a wide spectrum of participation from the population of study. We describe the participatory research processes of a large mixed method study on the psychosocial impact of dragon boating in individuals with breast cancer. In particular, we discuss the involvement of a Community Advisory Group (consisting of five breast cancer patients/survivors) in the development of the research study, data collection and analysis, and dissemination of the study results. We also outline the elements of a research workshop, in which 13 breast cancer patients/survivors were involved in the development of a provincial survey for the study. The purpose of this article is to share our experience of engaging cancer patients/survivors in a participatory research study. We discuss the value-based elements of participatory research (power sharing, voice and respect, reciprocity, and mutual benefit), and provide a case-based example of how these participatory elements were employed to potentially increase the validity of the survey instrument, to enhance the ethics of working with a cancer population, and ultimately contributed to a high survey response rate.

A community-based participatory research study of HIV and HPV vulnerabilities and prevention in two Pacific Islander communities: ethical challenges and solutions.

We describe ethical issues that emerged during a one-year CBPR study of HIV and human papillomavirus (HPV) vulnerabilities and prevention in two Pacific Islander (PI) communities, and the collaborative solutions to these challenges reached by academic and community partners. In our project case study analysis, we found that ethical tensions were linked mainly to issues of mutual trust and credibility in PI communities; cultural taboos associated with the nexus of religiosity and traditional PI culture; fears of privacy breaches in small, interconnected PI communities; and competing priorities of scientific rigor versus direct community services. Mutual capacity building and linking CBPR practice to PI social protocols are required for effective solutions and progress toward social justice outcomes.

Community health workers support community-based participatory research ethics: lessons learned along the research-to-practice-to-community continuum.

Ethical principles of community-based participatory research (CBPR)--specifically, community engagement, mutual learning, action-reflection, and commitment to sustainability--stem from the work of Kurt Lewin and Paulo Freire. These are particularly relevant in cancer disparities research because vulnerable populations are often construed to be powerless, supposedly benefiting from programs over which they have no control. The long history of exploiting minority individuals and communities for research purposes (the U.S. Public Health Service Tuskegee Syphilis Study being the most notorious) has left a legacy of mistrust of research and researchers. The purpose of this article is to examine experiences and lessons learned from community health workers (CHWs) in the 10-year translation of an educational intervention in the research-to-practice-to-community continuum. We conclude that the central role played by CHWs enabled the community to gain some degree of control over the intervention and its delivery, thus operationalizing the ethical principles of CBPR.

Photovoice as a community-based participatory research method among women living with HIV/AIDS: ethical opportunities and challenges.

Photovoice is a method in which participants use photography to identify, express, and disseminate their experiences. We conducted photovoice projects with women living with HIV/AIDS (N=21) to explore opportunities and challenges associated with the method. Photovoice provided a means to achieve two key principles of ethical public health practice: It gives participants opportunities to define their health priorities, and facilitates participant empowerment. Ethical challenges that were encountered related to exposing, through photographs, one's identity as living with HIV/AIDS, illicit activities, and other people. We discuss lessons learned for future practice to maximize the ethical opportunities and manage the challenges associated with using photovoice as an HIV-related CBPR strategy.

Youth researching youth: benefits, limitations and ethical considerations within a participatory research process.

OBJECTIVES: To examine the benefits, limitations and ethical issues associated with conducting participatory research on tobacco use using youth to research other youth. STUDY DESIGN: Community-based participatory research. METHODS: Research on tobacco use was conducted with students in the K'àlemì Dene School and Kaw Tay Whee School in the Northwest Territories, Canada, using PhotoVoice. The Grade 9-12 students acted as researchers. Researcher reflections and observations were assessed using "member checking," whereby students, teachers and community partners could agree or disagree with the researcher's interpretation. The students and teachers were further asked informally to share their own reflections and observations on this process. RESULTS AND CONCLUSIONS: Using youth to research other youth within a participatory research framework had many benefits for the quality of the research, the youth researchers and the community. The research was perceived by the researchers and participants to be more valid and credible. The approach was more appropriate for the students, and the youth researchers gained valuable research experience and a sense of ownership of both the research process and results. Viewing smoking through their children's eyes was seen by the community to be a powerful and effective means of creating awareness of the community environment. Limitations of the approach were residual response bias of participants, the short period of time to conduct the research and failure to fully explore student motivations to smoke or not to smoke. Ethical considerations included conducting research with minors, difficulties in obtaining written parental consent, decisions on cameras (disposable versus digital) and representation of all participants in the final research product.

The research ethics committee is not the enemy: oversight of community-based participatory research.

Researchers conducting community-based participatory research (CBPR) often complain about research ethics committee (REC) oversight of their research. RECs may contribute to researchers' frustrations by seemingly focusing on form over substance and by failing to communicate effectively with researchers about their mission and their specific concerns. UCSF CBPR researchers presented their views of the UCSF REC's review of its tobacco use study in "It's Like Tuskegee in Reverse: A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research." This article builds on that case study by providing some perspectives from the REC side, identifying how the researchers and the REC came to be at odds, and seeking to bridge the gap between the CBPR and REC worlds. In particular, the article explores the different perspectives on who are human subjects under the federal regulations in CBPR research, who counts as the community, and the purpose of REC oversight. It offers concrete suggestions for improving the relationship between CBPR researchers and RECs.

The ethical community consultation model as preparation for nursing research: a case study.

This article describes a case study in which community consultation was used to assist in the preparation of a research project on viewing self in the mirror after mastectomy. Breast cancer survivors, nurses, and other health care professionals were consulted using a variety of interactive modalities. Over a period of three months, pre-research planning information was obtained from participants. A descriptive qualitative design was used to analyze the data. The ethical goals of community consultation provided the framework for dialogue and the synthesis of information. During this project, the potential benefits of the proposed research study were explored. Possible risks to future participants were discussed, and recommendations for participant protection suggested. Community members provided insight into the legitimacy of the study. Community consultation is a tool that researchers may consider when designing studies.

Involving and engaging patients in cancer and palliative care research: workshop presentation.

This article is based on a workshop facilitated by the authors at the Palliative Care Congress, Glasgow 2008. The paper has three components. Firstly, setting the scene by describing a range of methods of involving people affected by cancer in research. Secondly, presenting data from a study of the experiences of people with cancer at the end of life that involved people with cancer at various stages of the research. Finally, describing the discussion from workshop participants on how we can involve patients with life-limiting conditions more in our practice and research.