Virtual Workshop—Achieving Health Equity in the NIH HEAL Initiative
Mon, 2/1/2021 - 2:00pm - 4:30pm
The issue of health equity has been brought to the fore by the ongoing COVID-19 pandemic, but it affects all areas of healthcare and research. The NIH Helping to End Addiction Long-termSM Initiative, or NIH HEAL InitiativeSM, convened a February 1, 2021, virtual workshop focusing on the importance of advancing health equity in chronic pain and opioid use disorder research. Experts from different fields discussed approaches to successfully recruiting, retaining, and engaging individuals from minority and other underserved populations that can also be implemented in HEAL Initiative-sponsored clinical studies.
As stated by George A. Mensah, M.D., FACC, Division Director at the National Heart, Lung, and Blood Institute, meaningful inclusion of underrepresented groups is not only mandated by law but is essential for ensuring the generalizability of study findings to the entire population. He cited the NIH-wide Community Engagement Alliance Against COVID-19 Disparities as an example of how diversity and inclusion can be enhanced in clinical trials.
Keynote speaker Nakela L. Cook, M.D., M.P.H., Executive Director of the Patient-Centered Outcomes Research Institute, explained that diversity, inclusion, and engagement are the prerequisites to achieving health equity and ultimately ensuring that all people have access to the resources and opportunities needed to reach their full health potential. Diversity is critical not only among study participants, but also among researchers, reviewers, and advisory panels. This diversity must progress to inclusion—behaviors and processes that make all stakeholders feel valued in the research process. Inclusion is also the basis for engagement, which can only be achieved when stakeholders—including patients, caregivers, clinicians, and insurers—are involved in every step of the research process. These measures together are important to enhance trust of underrepresented populations in the research.
Mistrust due to historical experiences, perceived stigma, and many other factors often prevents individuals from minority populations from participating in research. Dr. Cook emphasized that efforts to increase trust are crucial to promoting minority participation and thus health equity.
Diana Burgess, Ph.D., from the University of Minnesota summarized eight concrete measures to improve participation of individuals from minority populations in clinical trials based on her experiences with two trials of nonpharmacological treatments of chronic pain in Veterans. These measures include:
- Choosing appropriate study sites and study teams
- Proactively reaching out to potential participants
- Soliciting input from patients and patient advisory boards to address barriers to minority populations’ study participation
- Developing motivating informational materials
- Paying attention to any potential discrimination or hostile environments in the clinical settings where studies are being conducted
Additionally, Dr. Burgess noted some promise in the pandemic-triggered increase of virtual study settings that may help lower some barriers.
Other speakers also introduced successful strategies for increasing participation of underrepresented populations and furthering health equity. One presenter conceptualized recruitment of diverse study samples as a workflow problem and described measures to encourage recruitment of minority populations at each step of this workflow. Another presentation described experiences with a program targeting Native American populations and how, by engaging the Native American community from the earliest planning stages of the project, the researchers were able to ensure high participation from this and other hard-to-reach populations.
Additional topics covered at the workshop included barriers to minority inclusion and approaches to encouraging minority participation from the patient perspective, as well as the potential benefits of engaging patient resource groups and health equity groups to strengthen diversity in study populations.
The NIH HEAL Initiative will recruit participants for approximately 30 clinical studies across the United States. This offers an unprecedented opportunity to advance health equity in pain management and opioid use disorder (OUD) treatment through recruitment, retention, and inclusion of diverse populations in clinical research. Clinical studies are an essential tool for translating research findings into effective treatments for individuals suffering from pain conditions and OUD. However, the limited representation of racial/ethnic minorities and other populations that experience health disparities in scientific research—despite increasing diversity in the United States—jeopardizes the generalizability of study findings, increases the risk of perpetuating and exacerbating health disparities and decreases the quality of healthcare for all. This long-recognized disproportional representation is attributable to complex factors of social determinants of health (SDOH) such as access to healthcare, distrust of the healthcare system, racism/discrimination, stigma, and demographic and socioeconomic factors. Disparate recruitment strategies, perception of research, and barriers to cross-cultural communication are also contributing factors. Successful strategies to bolster participation of diverse populations in HEAL studies are needed.
The NIH HEAL Initiative sponsored this Health Equity workshop to address the importance of advancing health equity across clinical pain and OUD research, and identifying successful strategies for recruitment, retention, and inclusion of diverse populations that could be implemented in HEAL clinical studies. The workshop featured experts in clinical pain and OUD research, engagement and recruitment science, and patient-centered outcomes research as well as patient perspectives. Participants discussed factors that facilitate or deter clinical research participation and highlighted innovative strategies to increase recruitment, retention, and inclusion of racial/ethnic minorities and other populations that experience health disparities in HEAL clinical studies.
An overview was presented by Dr. Rebecca Baker, NIH HEAL Initiative director, and Dr. George Mensah, Division Director, NHLBI. Dr. Nakela Cook , Executive Director of PCORI (Patient-Centered Outcomes Research Institute), provided a keynote address. The keynote was followed by a panel session and discussion on successful strategies for increasing diversity and inclusion in clinical studies.
View the presentations*
- Achieving Health Equity in the NIH HEAL Initiative — Baker
- Diversity and Inclusion in the Clinical Studies: An NIH Perspective — Mensah
- Achieving Health Equity through Diversity, Inclusion, and Engagement — Cook
- Virtual Workshop on Health Equity — Jackson
- Bringing Cutting-Edge Research to the Prairie — Elliot
- Increasing Diversity and Inclusion in Clinical Trials: Lessons Learned and Lessons Learning — Burgess
- "One Patient's Perspective" On the Challenge to Achieve Diversity & Inclusion" — Patterson
- Engaging Patients, Investigators, and Stakeholders for the Whole Community — Anicich
*These slides are in the process of being made 508-compliant.