Community Engagement in Research

The Florida Department of Health strongly supports efforts by researchers to engage communities in the design and conduct of research.

This page provides examples and guidance.

What are some examples of how to engage community members?

• community advisory boards
• patient advocacy organizations
• patient support group (for example, a support group for women with breast cancer)
• including patients in the design of the research
• asking patients or community members for help in recruiting participants
• involving patients or community members in the conduct of research or analysis of research results
• collaborating with patients or community members to inform community members about the results of the research

Examples of research that engages community members

• Community advisory boards: The HIV Vaccine Trials Network uses a community advisory board to obtain comments about the design, conduct, and dissemination of research
• Patient advocacy organizations have been involved in the design, conduct, and funding of research. For example, Gay Mens Health Crisis (GHMC) was founded to fund and help conduct research into HIV and AIDS. The AIDS Community Research Initiative of America (ACRIA) is another example of community-based research involving HIV/AIDS. Neglected and rare diseases also rely upon patient groups in part for funding and advocacy.
• The World Health Organization lists over 200 patient support groups, some of which are involved in research.
  The Community-Campus Partnership for Health provides a listing of many resources and examples of funded research
• The Agency for Healthcare Research and Quality released a report [pdf format] on community based participatory research in 2004

What is the Florida Department of Health doing to support community based participatory research?

• The HRPP is participating in the development of a practice-based research network in Florida
• The Human Research Protection Program seeks to facilitate the involvement of community members and can publicize community or patient advocacy boards for research.
• Also, the HRPP seeks community members to participate in the review of research. Community members, particularly individuals with experience as research volunteers, or who have close connections with family members and others who have been part of research are encouraged to contact the HRPP.
• Help us expand our support for community based participatory research--contact us to ask questions, offer information or suggestions, and to provide feedback