The People-Centered Research Foundation (PCRF) is committed to accelerating people-driven research that is faster, more user friendly for patients and providers, and less costly. Our mission is: To engage patients, families, research participants, clinicians, scientists, and health system leaders in the design, conduct, dissemination, and implementation of research and analysis that leads to improvements in the health and well-being of individuals and populations and the performance of health care delivery systems.
The PCRF was established to sustain and expand a national network for clinical research that originated with funding from the Patient-Centered Outcomes Research Institute (PCORI) and studies conducted by The National Patient-Centered Clinical Research Network (PCORnet). PCORnet has led the way to transform the culture of clinical research by creating a system driven by the shared needs of people and their families, communities, clinicians, and health system leaders. We are ensuring PCORnet’s vision and unprecedented work continue.
The PCRF and its members believe that people affected by the research should be empowered to lead research that generates medical evidence that is meaningful to them.
The term people-centered research means scientific investigation that is designed to:
- IMPROVE THE OUTCOMES of individuals, populations, and the health systems that provide clinical care.
- ENGAGE PEOPLE, PATIENTS, AND HEALTH SYSTEMS—in addition to the usual inclusion of clinicians and researchers—in the conceptualization, design, conduct, dissemination, and implementation of the results of the research.
In March of 2017, the PCRF announced the establishment of its foundation. Read below for a letter from Dr. Robert Califf, Chair, Board of Directors.
The Foundation will provide retrospective observational research using its data network, prospective research that collects new data from patients, and high-impact clinical trials. Each study will deeply engage patients and clinicians in its design, conduct, and dissemination. A balanced mix of support from government, foundations, and industry will sponsor the studies. All projects will be aligned with the Foundation’s mission of centering projects around the needs of people and their health.
PCRF board members include:
- Richard Bankowitz, MD, MBA, FACP, Executive Vice President, Clinical Affairs, America’s Health Insurance Plans (AHIP)
- Josephine P. Briggs, MD, Director, National Center for Complementary and Integrative Health (NCCIH)
- Marc M. Boutin, JD, Chief Executive Officer, National Health Council (NHC)
- Robert Califf, MD, former FDA Commissioner and Professor of Cardiology at Duke
- Donna Cryer, President & CEO of the Global Liver Institute
- Craig Lipset, MBA, Head of Clinical Innovation, Worldwide Research & Development, Pfizer Inc.
- Reed Tuckson, MD, FACP, Managing Director of Tuckson Health Connections
- Joanne Waldstreicher, MD, Chief Medical Officer, Johnson & Johnson
The People-Centered Research Foundation was established to sustain and expand a national network for clinical research that originated with funding from the Patient-Centered Outcomes Research Institute (PCORI) and studies conducted by The National Patient-Centered Clinical Research Network (PCORnet).
Q: What is the People-Centered Research Foundation?
A: The PCRF is a new non-profit organization committed to accelerating people-driven research that is faster, more user friendly for patients and providers, and less costly.
Q: Who will be members of the new foundation?
A: Existing PCORnet Clinical Data Research Networks and Patient-Powered Research Networks, as well as institutions, the coordinating center, and health plans can join the Consortium as either Sustaining or General Members.
Q: What type of research is the PCRF going to do?
A: The PCRF will prioritize its research activities based on the potential to have a positive impact on the health of individuals and populations and the inclusion of people/patients and health systems in the prioritization, design, conduct, analysis and dissemination of the research. Research questions, protocol design and implementation, and study outcomes must be relevant and important to participants and populations.
Q: How will PCRF ensure that its studies are centered around people?
A: Patients, participants, patient advocates, and caregivers—people—will constitute no less than 20 percent of the Foundation’s Board of Directors. People will be involved in leadership roles in all committees, and will have the opportunity to be involved in the development and execution of the research.
Q: Who will sponsor the studies?
A: The PCRF research will be sponsored by a balanced mix of support from government, foundations, and industry. All projects will be aligned with the foundation’s mission of centering projects on the needs of people and their health.
The People-Centered Research Foundation (PCRF) will partner with all the stakeholders in the clinical research enterprise, including patients, clinicians, health systems leaders, representatives from the life sciences industry, patient advocacy groups, clinician professional organizations, and the government (NIH, FDA, etc.), to design and conduct research. We welcome your feedback and invite you to reach out to us for more information.
For more information about the PCRF, please contact us firstname.lastname@example.org.