Community-Based Review of Research Across Diverse Community Contexts: Key Characteristics, Critical Issues, and Future Directions.

A growing number of community-based organizations and community-academic partnerships are implementing processes to determine whether and how health research is conducted in their communities. These community-based research review processes (CRPs) can provide individual and community-level ethics protections, enhance the cultural relevance of study designs and competence of researchers, build community and academic research capacity, and shape research agendas that benefit diverse communities. To better understand how they are organized and function, representatives of 9 CRPs from across the United States convened in 2012 for a working meeting. In this article, we articulated and analyzed the models presented, offered guidance to communities that seek to establish a CRP, and made recommendations for future research, practice, and policy.

Moving From Transactional to Relational: How Funders Can Work in Partnership With Black, Indigenous and People of Color Communities.

BACKGROUND: The Racial Equity Coalition (REC) formed to address persistent educational disparities. The coalition was composed of 14 Black, Indigenous and People of Color (BIPOC) organizations that provide culturally integrative youth services. OBJECTIVES: REC, with support from United Way of King County, engaged in participatory research to identify commonalities and shared struggles to inform collective action. Participatory research aligns with REC's commitment to equitable participatory processes. This article focuses on REC's experiences with funders. The objective was to understand what creates positive and challenging experiences with funders, and to identify recommendations for funders to become more culturally responsive. METHODS: A research committee was formed including representatives of nine REC organizations and United Way of King County staff. The committee conducted interviews with each of the 14 REC organizations and conducted thematic analysis of interview transcripts. Through participatory analysis, the committee drafted narratives that were further refined through a series of research retreats attended by all REC organizations. RESULTS: Recommendations were to incentivize collaboration, listen to communities to create culturally responsive definitions of success and measurement strategies, arrive at mutually agreed upon approaches with organizations, honor the connections BIPOC organizations have with their communities, and provide unrestricted funding to allow BIPOC organizations greater agency. CONCLUSIONS: A major challenge for BIPOC organizations is navigating White dominant culture that too often shows up in funding requirements. Having to fit dominant culture standards stifles BIPOC organizations' abilities to meet community needs and the responsiveness of their approaches. REC identified recommendations for funders to be more culturally responsive and community centered.

Understanding community-based processes for research ethics review: a national study.

OBJECTIVES: Institutional review boards (IRBs), designed to protect individual study participants, do not routinely assess community consent, risks, and benefits. Community groups are establishing ethics review processes to determine whether and how research is conducted in their communities. To strengthen the ethics review of community-engaged research, we sought to identify and describe these processes. METHODS: In 2008 we conducted an online survey of US-based community groups and community-institutional partnerships involved in human-participants research. We identified 109 respondents who met participation criteria and had ethics review processes in place. RESULTS: The respondents' processes mainly functioned through community-institutional partnerships, community-based organizations, community health centers, and tribal organizations. These processes had been created primarily to ensure that the involved communities were engaged in and directly benefited from research and were protected from research harms. The primary process benefits included giving communities a voice in determining which studies were conducted and ensuring that studies were relevant and feasible, and that they built community capacity. The primary process challenges were the time and resources needed to support the process. CONCLUSIONS: Community-based processes for ethics review consider community-level ethical issues that institution-based IRBs often do not.

Strategies to Enhance Culturally Responsive Research: Community Research Recommendation Tool.

Under-representation of minorities in research hinders the ability to address persistent societal inequities. To understand how to increase the cultural responsiveness of research, a community-academic partnership conducted listening sessions and community forums with African Americans in North Carolina, Native Hawaiians in Hawai'i, and Hmong and Latino/a/x communities in Minnesota. Participants shared their concerns and desires for research, as well as generated strategies aimed at communities, researchers, and partnerships to enhance culturally responsive research practices. These findings resulted in a Community Research Recommendation Tool (CRRT) that can be used to guide community members, researchers, and partnerships as they build equitable research partnerships that honor cultural practices, account for sociopolitical contexts, and aim to redress societal inequities.

Relationships between community-based processes for research ethics review and institution-based IRBs: a national study.

Community groups are implementing research ethics review processes to determine whether and how research is conducted in their communities. We report on a survey of 109 of these community-based review processes about their relationships with institution based research ethics boards (I-REBs). Ninety-two percent reported that studies they review were also reviewed by an I-REB. Over half characterized their relationship with I-REBs positively. Those with positive relationships were significantly more likely to communicate with the involved I-REBs. Challenges when working with I-REBs included delays, communication problems, and lack of I-REB understanding of community-based participatory research. Strengthening relationships between community-based review processes and I-REBs could ultimately enhance reviews of community-engaged research.

Introduction to special issue: advancing the ethics of community-based participatory research.

Increasingly communities are engaging in community-based participatory research (CBPR) to address their pressing health concerns, frequently in partnership with institutions. CBPR with its underlying values challenges us to expand the traditional framework of ethical analysis to include community-level and partnership-oriented considerations. This special issue considers ethical considerations inherent in CBPR, presents examples of how communities have created their own processes for research ethics review, and identifies challenges CBPR teams may encounter with institution-based research ethics committees. Drawing upon the special issue articles and the work conducted by Community-Campus Partnerships for Health and the Tuskegee University National Center for Bioethics in Research and Health Care, we propose an approach and a set of strategies to create a system of research ethics review that more fully accounts for individual and community-level considerations.

Community-based participatory research and the ethics review process.

THIS EXPLORATORY STUDY EXAMINES the experiences of community-based participatory researchers' (CBPR) with the IRB. CBPR is oftentimes applied to non-clinical questions where academic researchers collaborate with community partners to address local concerns. Constant Comparative Method guided the analysis of ten CBPR interviews. The interview questions included: How does your conceptualization of research coincide with the regulations' definition? How are community partners involved in the IRB process? What are the benefits/challenges of the IRB process? And, what recommendations do you have to strengthen the IRB process? The article concludes with suggestions for IRB reviewers and CBPR partners on how to facilitate the review of CBPR projects.