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PCORnet is a research database that focuses on making research more efficient and less expensive for patients, researchers, health systems, and clinicians. PCORnet realizes the importance of patient-centered research, instead of being led by researchers, thus attributes the patient experience as its foundation.
There are two kinds of individual partner networks that make up PCORnet. These include Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs). Clinical Data Research Networks are trustworthy networks that exist in healthcare systems, and collect data, such as health information, during patient care. Patient-Powered Research Networks are controlled by patient groups and the patients’ partners who can provide vital information about a condition or characteristics of a condition. Together, the technical and logistical information from CDRNs and PPRNs is organized by a Coordinating Center through Harvard Pilgrim Health Care Institute, the Duke Clinical Research Institute, and Genetic Alliance.
PCORnet started at a Phase I development stage with a total of 29 individual partner networks working to ensure the security of national resources for the highest quality research and keep patients on the forefront of all research initiatives. Phase II was granted by a $142 million award by PCORI’s Board in 2015 towards the next three years of development. This award is funding network infrascructure to help PCORnet conduct future research.
The Phase I development stage was carefully governed by PCORI senior leadership and representatives od PCORnet’s multiple stakeholder communities, which include a Steering Committee, an Executive Committee, and a Patient Council.
The PCORnet Council is the representative advisory body for PCORnet, built on “shared principals of trust, responsibility, respect, and inclusivity, and strives to foster a shared commitment to realizing the PCORnet vision.” Voting members of policies, operations, and products of PCORnet are Rachael L. Fleurence, PhD, Vice Chair, PCORI, PCORnet Program Director and Peter Margolis, MD, PhD, Chair, Principal Investigator ImproveCareNow PPRN.
The PCORnet Executive Committee members are Rachael Fleurence, PhD, Chair, PCORI, PCORnet Program Director, Christopher B. Forrest, MD, PhD, Principal Investigator, National PEDSnet: A Pediatric Learning Health System CDRN, Adrian Hernandez, MD, MHS, Co-Principal Investigator, PCORnet Coordinating Center, Peter Margolis, MD, PhD, Principal Investigator ImproveCareNow PPRN, Elizabeth McGlynn, PhD, Principal Investigator, Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network, Peter A. Merkel, MD, MPH, Principal Investigator, The Vasculitis Patient Powered Research Network, Richard Platt, MD, MSc, Co-Principal Investigator, PCORnet Coordinating Center, Russell Rothman, MD, Principal Investigator, Mid-South CDRN, Joe V. Selby, MD, MPH, PCORI Executive Director, Sharon Terry, MA, Principal Investigator, PCORnet Coordinating Center & Principal Investigator, Community-Engaged Network for All (CENA), and Russ Waitman, PhD, Principal Investigator, Greater Plains Collaborative (GPC) CDRN.
The PCORnet Nominating Committee meets before the PCORnet Council schedules yearly leadership elections as well as on an as-needed basis for any vacant leadership positions. The members include Bill Clark, BS, Patient Research Partner, COPD PPRN, Elizabeth Cope, PhD, MPH, Principal Investigator, NephCure Kidney International Network PPRN, Rachael Fleurence, PhD, Program Director, PCORI, CER Methods and Infrastructure, Ken Mandl, MD, MPH, Principal Investigator, Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) CDRN, Terry Mazany, MA, MBA, Co-Chair, Principal Investigator Chicago Area Patient Centered Outcomes Research Network (CAPriCORN) CDRN, and Holly Peay, PhD, MS, Co-Chair, Principal Investigator, DuchenneConnect Registry Network PPRN.
The Data Committee controls PCORnet’s progressive data network. Members include Ravi Bhosale, Patient Representative, OneFlorida CDRN, Bowen Chung, MD, MSHS, Co-Principal Investigator of Community and Patient Partnered Participatory Research Network PPRN, Lesley Curtis, PhD, Coordinating Center Representative, Rachel Hess, MD, MS, Principal Investigator of PaTH CDRN, Michael G. Kahn, MD, PhD, Informatics Lead for PEDSnet and PORTAL CDRNs, Abel Kho, MD, Co-Principal Investigator and Informatics Lead of the Chicago Area Patient Centered Outcomes Research Network (CAPriCORN) CDRN, Keith Marsolo, PhD, Co-Investigator in the ImproveCareNow PPRN as well as the PEDSnet CDRN, Michael E. Matheny, MD, MS, MPH, Co-Investigator pSCANNER CDRN, Daniella Meeker, PhD, Co-Investigator pSCANNER CDRN, Shawn Murphy, MD, PhD, Co-Investigator SCILHS CDRN, Heather Siefers, MS, Patient Representative, MS PPRN, and Russ Waitman, PhD, Chair, Principal Investigator, Greater Plains Collaborative (GPC) CDRN.
The Engagement Committee supervises the design of PCORnet’s system for attributed stakeholders for reviewing policies and standard operating systems. Members include Rebekah S.M. Angove, PhD, Director of Engagement for Research Action for Health Network (REACHnet) CDRN, Cherie C. Binns, RN, BS, MSCN, Research Committee Member for Multiple Sclerosis PPRN, Meryl Comer, Co-Principal Investigator for the Alzheimer’s PPRN, Jennifer Jo Erickson, Patient Representative, ImproveCareNow PPRN, Michael Horberg, MD, MAS, FACP, FIDSA, PORTAL CDRN, Kim Kimminau, Greater Plans Collaborative CDRN, J. Kiely Law, Principal Investigator, Interactive Autism Network PPRN, Sharon Terry, MA, Chair, Principal Investigator, Community-Engaged Network for All (CENA) PPRN, Nate Warren, ADVANCE CDRN, Neely Williams, Mid-South CDRN, and Pluscedia Williams, CPPRN PPRN.
The Research Committee manages the improvement of PCORnet’s research activities. Members include Tim Carey, MD, MPH, Co-Investigator, Mid-South CDRN, Tom Carton, PhD, Principal Investigator, REACHnet CDRN, Christopher B. Forrest, MD, PhD, Principal Investigator, National PEDSnet: A Pediatric Learning Health System CDRN, Adrian Hernandez, MD, MHS, FAHA, Co-Principal Investigator, PCORnet Coordinating Center, Jeff Krischer, PhD, Vasculitis PPRN, Barbara Kroner, PhD, Co-Investigator, Rare Epilepsy Network PPRN, Andrew Nierenberg, MD, Principal Investigator, Mood PPRN, Harold Pincus, MD, NYC CDRN, Mark J. Pletcher, MD, MPH, Principal Investigator, Health eHeart Alliance PPRN, Veronique Roger, MD, MPH, Principal Investigator, LHSnet CDRN, Elizabeth Shenkman, PhD, Principal Investigator, OneFlorida CDRN, and Rebecca Sutphen, MD, FACMG, Principal Investigator, ABOUT Network PPRN.
The PCORnet Advisory Group is responsible for building PCORnet relationships with funders and coordinate associated federal and private sector health data and research initiatives. Members include The Agency for Healthcare Research and Quality, The Office of the Assistant Secretary of Health and Human Services for Planning and Evaluation, The Centers for Disease Control and Prevention, The Center for Medicare and Medicaid Services, The Food and Drug Administration, The National Institutes of Health, The Office of the National Coordinator for Health Information Technology, and Organizations from such non-federal sectors as the life sciences industry, health research foundations, educational institutions, and others.