Patient Engagement Virtual Workshop—Harnessing the Power of Patients and Stakeholders to Advance the Research Goals of the NIH HEAL Initiative

Mon, 3/15/2021 - 1:00pm - 4:30pm

Researchers in the pain and substance use fields are engaging people with lived experience, to enhance the research process and advance research goals. To highlight the benefits of involving people with lived experience in research, the NIH Helping to End Addiction Long-term®, or NIH HEAL Initiative®, convened a virtual workshop on harnessing the power of patients and stakeholders to advance the research goals of the NIH HEAL Initiative. As Dr. Nora Volkow, Director of the National Institute on Drug Abuse, stated in her opening remarks, the patients’ social environment, including people with lived experience, can provide powerful support and promote recovery. Therefore, it is essential to thoughtfully incorporate the experiences and input of various stakeholders.

Building Trust With Patients and Communities

Two panel discussions explored the issue from the perspectives of patients and researchers. In the patient and stakeholder panel, one presenter described how engaging patients through shared decision-making and individualized opioid prescription protocols for new mothers after a Cesarean section can help avoid unnecessary opioid use and lower risk of leftover pills that could be misused. Several presenters stressed the need to:

  • Involve patients and other stakeholders in all aspects of research.
  • Treat them as equals.
  • Acknowledge their contributions.
  • After the study, inform them about outcomes of the research in which they participated.

As presenter Kevin Charles put it, “The populations we navigate don’t really care how much you know until they know how much you care.”

Presenters also highlighted the need to address mistrust about research and science that exists particularly in the African American community, not only regarding clinical trial participation but also related to adoption of new treatments. They further emphasized the utility of involving community advisory boards for creating patient materials, including obtaining feedback from people with lived experience, so these materials can be culturally appropriate for their intended audiences.

Both pain and opioid use disorder are associated with stigma. Thus, communication with research participants and stakeholders works best in safe, non-stigmatizing situations, including in places that are not typically used as research sites, such as community centers or local churches.

In the second panel, seven researchers conducting a wide range of studies both in pain treatment and opioid use disorder treatment discussed a variety of specific measures to enhance patient engagement, such as:

  • Building teams that include members of a community you are working with.
  • Recruiting “citizen scientists” who have an active voice in all phases of research.
  • Creating a community asset map.
  • Expanding research sites beyond typical academic environments.

Through such measures, researchers can generate a spectrum of patient and community engagement.

One recurrent topic was the crucial role of community advisory boards for clinical trial planning and implementation and the importance of community engagement in general. For example, the HEALing Communities Study is built on the premise that each community has expertise necessary to inform solutions that can be successful for their unique community environments. The panelists also presented suggestions on how to keep community advisory boards active and engaged, how to thank participants and board members for their valuable service, and how to increase trust in research, especially among individuals from minority and underserved populations.

Watch the Recording

This March 15, 2021 meeting showcased patient and stakeholder engagement in NIH HEAL Initiative studies.