Patient and Community Engagement Across HEAL

The survey defined patient advisors as people with lived experience of pain or opioid use disorder that serve in an advisory capacity to researchers but who aren’t current participants in HEAL research. Community advisors referred to other individuals or groups with an interest in the study’s design, implementation, or outcomes, such as healthcare providers or patient advocacy organizations.

Across the 523 HEAL research projects that received the survey, researchers from 147 projects provided a response (~28%). The number of researchers that responded varied across HEAL’s different areas of research. For example, there were more responses from researchers testing new strategies for improving people’s pain management, those whose research improves interventions and treatments for people with opioid use disorder, and researchers working to help translate research into practice in real-world settings to treat opioid addiction. There were fewer responses for research that is at the stage where it either doesn’t or very minimally involves people, such as basic preclinical research and medication development. HEAL is continuing efforts to convey the importance of considering patient perspectives and experiences in all research funded by the initiative.

• The most common types of community advisors who were engaged with HEAL research were healthcare providers; people in recovery; government organizations; and peer advisors (i.e., people in recovery providing assistance to others who are attempting recovery).
• Patient and community advisors typically contributed information related to participant recruitment and retention, as well as the design of outreach materials.
• Most researchers who responded to the survey reported that their NIH grant either fully or partially covered patient and community engagement activities, and some received supplemental funding (such as from their home institution) to support those activities. Some have pre-existing standing committees of patient or community advisors that can serve as partners on their research studies.
• Most researchers who responded said their patient or community advisors are from backgrounds considered underrepresented in medical research and that their study teams had staff from backgrounds reflecting their research study populations.
• Most researchers who responded to the survey said that they would share their study findings with their patient and community advisors in some way, but relatively few had metrics or goals for measuring the success of their engagement efforts and advisors’ satisfaction with their involvement in the research process.
• Researchers who responded to the survey noted the importance of developing patient and community partner relationships well in advance of the grant application being developed and the research being carried out.
• Researchers have diverse views regarding what patient engagement in research means and should look like in a research study.
• Researchers who conduct research that does not involve patients might not yet fully understand how perspectives from patients and communities could benefit their research.
• Responses suggest that the research community can think more about how to train both study teams and partners (e.g., people with lived experience, community partners, others) and to ensure that patient and community views are fully considered in research.  

The survey helped gauge the landscape of patient and community engagement efforts across HEAL research. The insights identified make it clear that there is much more work to be done to support researchers in implementing meaningful, intentional true engagement across the research portfolio.