BUILDING COMMUNITY PARTNERSHIPS IN RESEARCH
This report is in response to the President's request to the Secretary of Health and Human Services (HHS) to identify strategies to improve the participation of communities, especially minority communities, in research and to build trust between researchers and communities. It provides a framework through which Federal health agencies can establish an ethical basis for community-based research, enhance scientific and public credibility, and provide mechanisms to help build public trust in health research.
Minority and poor communities lag behind the overall U.S. population on virtually all health status indicators, underscoring the need for continued focus on health research to identify solutions to improve health status in these communities. Through commitment to a participatory approach, communities and researchers have the opportunity to build trust through true partnership. By working in partnership, communities, researchers, and funding agencies can further maximize the benefits of research by translating research findings into comprehensive health programs.
Basic issues of involving the community in research must be acknowledged and addressed. Inclusion is the core issue for building community partnerships in research, and it requires "grassroots" involvement. Researchers must reach out broadly so that all pertinent experience is represented. By bringing together the knowledge and experience of communities and researchers, excellence in science is enhanced. True collaboration and partnership entails sharing risks and responsibilities as well as resources and rewards. Commitment of adequate time and resources is essential--building a research relationship generally takes from two to five years, and resources must be available to support the activities and infrastructure necessary to build and sustain such partnerships. Building an effective partnership requires acknowledgement of the impacts of history, culture, and society on many of our most challenging health issues.
Trust must be built on the actions of researchers, not just faith in the benefits of research, and decision-making power must be shared throughout the research process. History demonstrates that people have been harmed when medical and public health research is planned and conducted without consideration of the human context of such work or regard for human rights. Individuals who participate in such research are directly affected in a variety of adverse ways; however, as members of a demographic or geographic group, the individuals' entire group or "community" is also indirectly affected and unintended, negative outcomes are often the result. Therefore, ethics must be addressed at the community level as well as at the individual level. Policies must be developed that facilitate participatory research through appropriate funding mechanisms. Education and training mechanisms must be developed to provide both communities and researchers with the necessary skills for a balanced partnership. Accountability and oversight mechanisms are necessary to ensure that mutual commitments are kept and that a system for corrective action is implemented when errors in judgment or overt abuses occur.