In June, PMC nominated a slate of individuals representing the diversity of our coalition including representatives from patient advocacy groups, hospitals and health systems, the pharmaceutical and diagnostics industries, and public health agencies for appointment to the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors. We were pleased that the Government Accountability Office (GAO) included Pfizer’s Chief Medical Officer Dr. Freda Lewis-Hall, a PMC nominee with expertise in and a commitment to personalized medicine, as a member of the PCORI Board of Governors.
But while we thank GAO for selecting a group of individuals for the PCORI Board of Governors who are committed to improving the health of the American people through research that will, we hope, improve outcomes, we also recognize that our work is not finished. We must continue to advocate for personalized medicine both with the PCORI Board of Governors and eventually with its Methodology Committee, to ensure that comparative effectiveness research considers population subtypes, individual variation, and personalized medicine in general.
The 21-member PCORI Board of Governors, established by the Patient Protection and Affordable Care Act, is tasked with assisting patients, clinicians, purchasers, and policymakers in making informed, evidence-based, health decisions. It will identify research priorities, carry out a research agenda, and receive support from a Methodology Committee and expert advisory panels.
We were disappointed that the newly selected members of the PCORI Board of Governors did not include more individuals with specific expertise in personalized medicine, in particular, individuals representing small, innovative diagnostics companies. Small diagnostics companies, which develop new tests for detecting disease, are central to the field of personalized medicine and will play a necessary and important role in the research PCORI will conduct. We hope that the yet-to-be-named Methodology Committee will include more representation from this important sector.
The members picked today by the GAO include the 19 members below, as well as the Director of the National Institutes of Health and the Director of the Agency for Healthcare Research and Quality, or their designees:
- Freda Lewis-Hall, Pfizer
- Eugene Washington, MD, UCLA
- Steven Lipstein, MHA, BJC Health Care
- Christine Goertz, Palmer College of Chiropractic
- Sharon Levine, MD, Permanente
- Ellen Sigal, PhD, Friends of Cancer Research
- Harlan Weisman, MD, Johnson and Johnson
- Robert Zwolak, MD, Dartmouth-Hitchcock
- Lawrence Becker, Xerox
- Arnold Epstein, MD, Harvard/Brigham and Women’s
- Andrew Imperato, AAPD
- Robert Jesse, MD, Department of Veterans Affairs
- Grayson Norquist, MD, Dept of Psychiatry and Human Behavior, University of Mississippi Medical Center
- Debra Barksdale, UNC Chapel Hill School of Nursing
- Kerry Barnett, The Regence Group
- Allen Douma, AARP
- Leah Hole-Currty, JD, Washington State HTA program
- Harlan Krumholz, MD, Yale University
- Richard Kuntz, Medtronic