Arguing that including stakeholders as full partners in all aspects of designing, conducting and interpreting research is critical to producing research that can better meet the needs of the population of interest, the article calls upon researchers in the medical field to shed misconceptions that laypeople cannot contribute meaningfully to science, or that “community engagement” means little more than recruiting patients for trials.
“Researchers often wonder how to engage the community in their trials, but we should turn the question 180 degrees,” said Steven H. Woolf, M.D., director of the VCU Center on Society and Health and lead author of the Health Affairs article. “The question is not how to engage the community in our research but how to get researchers engaged in the community’s work to improve population health.”
Citing the benefits of engaging patients and the public as full stakeholders in the design and conduct of research, the authors’ article discusses two examples from studies conducted by VCU researchers. The first study, led by the VCU Department of Family Medicine and Population Health and funded by the Patient Centered Outcomes Research Institute, devoted the entire first year to engaging patients and other stakeholders for input on the research methods. Woolf and his colleagues report that 46 percent of all comments came from patients, more than from the researchers or clinicians.
The second example cites the extensive work of the Center on Society and Health in Richmond’s East End, an economically disadvantaged neighborhood where the Engaging Richmond project has worked since 2011 to involve residents as partners in identifying health priorities, conducting research and working with local government and community organizations to improve neighborhood conditions that affect health.
Along with their involvement in research, the partnership has sponsored training events, raised awareness about mental health issues, sought help for residents of public housing and advised on similar engagement efforts in other areas. The VCU C. Kenneth and Dianne Wright Center for Clinical and Translational Research supports this work with funding from an NIH Clinical and Translational Science Award.
“Community engagement in research is critical to the mission of the CCTR,” said F. Gerard Moeller, M.D., director of the CCTR. “This work shows how VCU is working with researchers to make their research more relevant to the priorities and practices of the community.”
In conjunction with the article’s publication, Woolf was invited to present his research at a release event hosted by Health Affairs on April 7 in Washington, D.C. Alan Weil, editor-in-chief of Health Affairs, and Joe Selby, executive director of PCORI, provided opening remarks. The article from VCU is titled “Authentic Engagement of Patients and Communities Can Transform Research, Practice and Policy.”
To read the full article, visit www.healthaffairs.org.
To read more about Engaging Richmond, visit societyhealth.vcu.edu/