The Patient-Centered Outcomes Research Institute has provided the foundation for generational health and hope to African-American communities, communities of color, marginalized communities, communities of faith, and others with elevated risks.
I first became involved with PCORI in July 2012 when I was asked to be the voice of patients at a national PCORI symposium at Stanford University. For me, that event demonstrated PCORI’s commitment to ensure that patients would be the center of transforming healthcare research, involving them from the beginning to end of the research process. As a former healthcare administrator in a safety-net system, I have first-hand experience of the burden of disease on communities of color, their difficulty in trusting the health care system, and most importantly, their mistrust of research because of historical harm.
Through my involvement with PCORI, I am committed to ensuring that communities of color and other minorities are not only engaged in research but understand that engagement is critical to achieving the health care and quality of life we want and deserve.
From our work with these projects, we have come to learn that we can participate in research without fear and with trusted partners.
My mission has been to involve local communities of color in research initiatives (Pastors4PCOR, the S.T.A.R. Initiative, CAPriCORN, Annual Community Days of Research and Engagement) and in both local and national PCORI projects, such as Ar-Power, ADAPTABLE, HealtheHeart Alliance, and the PCORI Ambassador program. From our work with these projects, we have come to learn that we can participate in research without fear and with trusted partners. Both the communities and researchers have benefitted from these rich interactions.
PCORI’s Engagement Rubric, with its engagement principles, has empowered communities of color to become activated in ways not experienced before in health care.
We plan to continue this work to embrace the promise of PCORI for future generations.
Regina Greer-Smith, MPH, LFACHE, is the president and owner of Healthcare Research Associates. She is part of a team that formed The Midwest /Partners Patient Engagement Cluster, which seeks to connect patients and researchers in comparative effectiveness research and patient-centered outcomes research. She is also a member of PCORI’s Advisory Panel for Patient Engagement.