The Board of Governors of the new Patient-Centered Outcomes Research Institute (PCORI) held its first public meeting on November 23, 2010, in Rockville, Maryland, to discuss the mission and vision for the Institute as well as planning and communications over the next six months.  The Patient Protection and Affordable Care Act of 2010 (the new health care reform law) established PCORI as an independent, non-profit organization that will support research on how to most effectively prevent, treat, and manage diseases and disorders.  The PCORI Board of Governors is comprised of the Directors of the National Institutes of Health (NIH) and Agency for Healthcare Research and Quality (AHRQ), or their designees, and 19 other members who are appointed by the U.S. Comptroller General (head of the U.S. Government Accountability Office).

Recurring themes in the Board’s discussion were the needs to empower patients to fully participate in the health care process, to focus on underserved populations, to reach patients in their communities, to strengthen information available to providers, and to ensure that PCORI’s research is used by providers and patients in their ongoing decision making.  

Among the specific research topics discussed were: learning how interventions affect particular populations and subpopulations; the need for shorter, targeted studies in addition to large-scale randomized clinical trials; developing new research methodologies and tools to determine variables for risk mitigation at the community level; dealing with probabilities and uncertainty in health knowledge; behavioral management; social issues; and “precision science” or science tailored to the unique needs of specific subpopulations.

Francis Collins, Director of the NIH, talked about the “critical need to look at the science of health behavior change . . . both of patients and of providers.”  Said Collins, “We have to understand how health behavior can be modified and that in itself is a research project.”  Collins also communicated his confidence in Robert Kaplan in his new role as the Associate Director for Behavioral and Social Sciences Research at NIH.  Collins had expressed his support of behavioral research before in a June 15 hearing of the House Energy and Commerce Subcommittee on Health, where he noted the importance of research on how to motivate health behavior change.

Board member Grayson Norquist, Chair of Psychiatry and Human Behavior at the University of Mississippi Medical Center, emphasized the importance of studying system behavior as well as individual provider behavior.  Said Norquist, “We need to look at best practices for behavioral modification.”

A major discussion in the meeting centered on how best to build on the foundation of existing research.  With the understanding that funding large randomized trials is not always possible, the Board focused on plans for data integration, identifying data registries already in existence, collaborating with industry groups and HMOs, and utilizing electronic health records.  This led to a discussion of the need for interoperability of data, particularly among different industries, and the role PCORI might play in standardizing data.  Carolyn Clancy, Director of AHRQ, offered that her agency could share its in-depth inventory and assessments about what data exist and where investments have been made.

The Board determined PCORI’s next steps to be (a) to develop a taxonomy and nomenclature  for research and data standards; (b) to conduct landscape surveillance, including of NIH, AHRQ, the Institute of Medicine, industry, and the provider population, in order to determine existing relevant research; (c) to identify gaps, such as those in information, in dissemination, and in practice policy; and (d) to determine what kind of research and new technologies are necessary to address these gaps, with an emphasis on subpopulations and a continuum of care framework.

The Patient Protection and Affordable Care Act established the Patient-Centered Outcomes Research Trust Fund, which will fund PCORI through 2019.  The Trust Fund has been allocated $10 million for 2010, $50 million for 2011, and $150 million for 2012.  Beginning in 2013, the Trust Fund will be financed by transfers from the Medicare Trust Fund ($2 per Medicare beneficiary annually) as well as through private health plans ($2 per patient annually), adjusted for health expenditures and inflation.

In addition to the Board of Governors, a 15-member PCORI Methodology Committee will be appointed by the Comptroller General.  With advice from the APA Board of Scientific Affairs and others, the APA Science Government Relations Office recently nominated psychologists to serve on this committee. It is expected that the Comptroller General will announce appointments to the committee in early 2011. 

Christine Jamieson is Science Policy Associate in the APA Science Government Relations Office.