Consumer Patient Researcher Roundtable

An initiative of AcademyHealth, the Consumer Patient Researcher Roundtable (CPR) fosters collaborations among consumers, patients, researchers and delivery systems leaders committed to joint action to improve the research infrastructure and advance the use of electronic health data for quality improvement and research. CPR participants engage in deliberative dialogue and collaborative efforts in areas of shared interest and priority, including data governance (e.g., access, privacy), research infrastructure and methods.

Launched by AcademyHealth in 2011 with a small group of participants, the CPR has grown in both size and scope. Initial activities largely supported the production of work related to two AcademyHealth programs: the Electronic Data Methods (EDM) Forum and the PCORI Pilot Projects Learning Network. More recently, the group has cultivated opportunities independent of AcademyHealth programs and has several initiatives ongoing.

People:

Current Members:

• Suzanne Bakken, Columbia University
• Rene Cabral-Daniels, Community Care Network of Virginia, Inc.
• Loran Cook, Billian’s HealthData
• Kay Dickersin, Johns Hopkins Bloomberg School of Public Health
• Bryan Dowd, University of Minnesota
• Steve Findlay, Consumer Advocate
• Mark Gorman, Patient Advocate
• Krishnan Iyer, mohCare, Inc.
• Julia Kohn, Planned Parenthood Federation of America
• Danielle Lavallee, University of Washington
• Erin Mackay, National Partnership for Women and Families
• Anna McCollister-Slipp, Galileo Analytics
• Carly Medosch, Centers for Medicare and Medicaid Services
• Erin Moore, Cystic Fibrosis Foundation
• Sally Okun, PatientsLikeMe
• N. Lee Rucker, Enhance Value
• Lucy Savitz, Intermountain Health
• Shoshanna Sofaer, American Institutes for Research
• Mike Stoto, Georgetown University
• Patience White, George Washington University

The CPR Roundtable convenes virtual meetings on a quarterly basis. Members also hold smaller ad hoc work groups on an as needed basis to develop relevant initiatives.

Members have also informed a number of major AcademyHealth convenings, including support with securing the Patients Included designation.

Reports and Publications

• Data quality framework developed as part of PCORI methods project to assess data quality
  • “Patients, Consumers, and Caregivers: The Original Data Stewards,” eGEMs, 2015
  • “Transparent Reporting of Data Quality in Distributed Data Networks,” eGEMs, 2015
• PCORI evaluative framework for patient engagement in research (pending)
• “A framework for patient and consumer engagement in evidence generation,” EDM Forum, AcademyHealth, September 2012
• “Involving Patients and Consumers in Research: New Opportunities for Meaningful Engagement in Research and Quality Improvement,” EDM Forum, AcademyHealth, June 2012