PCORI’s reauthorizing legislation included a new mandate to consider “the full range of outcomes,” including cost and economic impacts, in PCORI-funded research. PCORI seeks public input as we move forward with formalizing our interpretation and implementation of this mandate to build on PCORI’s mission to generate evidence that is useful and relevant to inform healthcare decisions.
As a basis for public input, PCORI released a set of “Principles for the Consideration of the Full Range of Outcomes Data” for public comment and hosted a webinar series to serve as a platform for patients, caregivers, consumers, and other stakeholders to provide input on “what” data to capture, “how” it may be captured, and “when” it is appropriate to capture this data.
Comments and input received through the public comment period and webinar series will contribute to PCORI’s further development and revision of the “Principles”. The first webinar of the series on October 5, comprised of individuals representing patients, caregivers, consumers, and the disability rights community.
- Gwen E. Darien, Executive Vice President for Patient Advocacy and Engagement, National Patient Advocate Foundation
- Eric Gascho, Vice President, Policy and Government Affairs, National Health Council
- Leah McCormick Howard, J.D., Chief Operating Officer, National Psoriasis Foundation
- Leigh Purvis, Director of Health Care Costs and Access, Public Policy Institute, American Association of Retired Persons
- Rylin Rodgers, Director of Public Policy, Association of University Centers on Disabilities
- Susan Dentzer, Senior Policy Fellow, Duke-Margolis Center for Health Policy