Section 13: Community-Based Research
With increased focus of funding agencies and researchers on approaches to public health research and the influence of social and political systems on behavioral and health outcomes, there is increased potential for more faculty to become involved in community-based research. Due to this increased interest and focus, it is important for the University, researchers, and even the IRB to understand the distinctions along a continuum of community-based research. As with research involving individuals, all parties to the research, especially the IRB, must consider both individual and community interests, risks, and potential benefits.
13.1.1 Principles for Community-Based Research
The University recognizes the importance of research conducted within communities. When conducting or participating in these research activities, the University desires to engage the community, strengthen community linkages, and respect community values. Human research has historically been guided by principles relating to risk and benefits to the individual research subject. Community-based research has interaction with the community that goes beyond interactions with individual potential research subjects and, therefore, requires consideration of the risks and benefits to the stakeholder community.
Because there is a continuum of involvement between University researchers and communities, a single set of guidelines is not appropriate. However, all research involving communities should follow best practices for respectful and productive relationships. The following principles, in addition to those principles for human subjects research, then guide the research: The following principles are in addition to those principles for all human subjects research.
- Principles of community-based research necessitate that the researcher:
- Should be aware and respectful of community interests that go beyond those of individual potential research subjects
- Identify potential community stakeholders as well as individual research subjects.
- Inform the community stakeholders and potential research subjects about the research.
- Invite feedback regarding concerns about the research from community stakeholders and individual potential research subjects.
- Principles for basic community partnership necessitate that the researcher should do all of the above, plus:
- Respect the community partner's interest in the project and be open to ways that the community might benefit or want to use the information.
- Disseminate research findings to both community stakeholders and individual research subjects.
- Principles for close community partnership research (sometimes referred to as Community-based Participatory Research or CBPR) will want to do all of the above along with:
- Having the research topic address a community-defined need, question or problem, and strive to combine knowledge with action to achieve necessary changes.
- Recognizing the research as a partnership and be open to the guidance of community insight and experience.
- Having the partnership appropriately balance power and decision-making between the researchers and the community participants in a way that is mutually acceptable.
- Partners making clear and open communication an ongoing priority by striving to understand each other's needs and self-interests.
- Partners recognizing race, ethnicity, class, and other aspects of culture matter and talk openly about these issues.
- Feedback among all stakeholders in the partnership, with the goals of continuously improving the partnership and its outcomes.
- Realizing partnerships can dissolve and plan a process for closure.
University of Minnesota, Clinical Trials Office. Performance of Community-Based Research: Guidance Statement. http://www.ctsi.umn.edu/prod/groups/ahc/@pub/
Brown P, Morello R, et al. Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study. Env Health 9: 39, 2010.
Israel BA, Schultz AJ, Parker EA and Becker AB. Review of community-based research: Assessing partnership approaches to improve public health. Ann Rev Pub Health 19: 173-202, 1998.