Patient and Community Engagement Across HEAL

The HEAL Community Partner Committee (HCPC), convened in 2021, aims to help the NIH HEAL Initiative identify, refine, and prioritize patient and community engagement activities. Early on, committee members took an interest in developing resources for researchers. As a necessary first step, HCPC members sought more information about the level of patient and community engagement throughout HEAL research. The committee teamed with HEAL scientific staff to develop a survey that assessed HEAL researchers’ patient and community engagement activities. The goal was to assess researchers’ efforts to incorporate the views of people with lived experience of pain conditions and/or opioid use disorder as they developed and implemented their research.

“People who have lived through that experience are in the best position to tell you why something is going to work or not work.”

In Their Own Words

“Employing [people with lived experience]
. . .has helped support community engagement with our clinic systems because they have established relationships with [other people with lived experience], are local, and are well-revered in the community.”

The survey focused on engagement of people with lived experience of pain and opioid use disorder as well as community engagement more broadly (e.g., with family members, advocacy organizations, healthcare providers, and government officials). These types of interactions are critical because they can make research results more relevant and useful to people and communities. Patient engagement strategies and protocols are particularly important for research on pain and opioid use disorder, as they set the stage for ongoing collaborative relationships with communities that may be stigmatized.

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 survey revealed a few common insights:

  • Studies had various approaches to identifying patient advisors such as using participants from previous studies; using relationships with community organizations (social service agencies, health centers, substance use treatment facilities, and government offices), social media, or pre-existing patient advisory councils housed at the researchers’ institutions.
Community Advisors surrounded by icons depicting Healthcare Providers, People With Lived Experience, Peer Advisors, and Government
  • 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.

In Their Own Words

“Maintaining partner boards who are true partners. . .is incredibly time-consuming and difficult. . .but very much worth it. Our research team has learned so much and is now engaging people from these communities to seek research careers.”

Next Steps

HEAL is committed to ensuring that the studies it funds pursue an appropriate level of patient and community engagement to ensure that research results will be relevant and useful for the communities that HEAL serves.

As part of this commitment thus far, and with feedback from the HCPC, HEAL has provided some of the following opportunities to help promote engagement throughout our research:

HEAL continues to work with the HCPC and the broader HEAL research community to build on these initial efforts and ensure that people with lived experience and community partners are included in every stage of research. HEAL’s goal is that people with lived experience, communities, and researchers have the resources they need to intentionally and meaningfully pursue these important interactions.

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Patient and Community Engagement

The NIH HEAL Initiative® views engagement with people with lived experience throughout the research process as a fundamental value.

Learn more about patient engagement