“By acting on these recommendations, policymakers will more effectively drive organizations to change their behavior and culture related to engagement, similar to the change in culture for research being advanced by PCORI. These recommendations make clear that there are opportunities to advance patient engagement both in the processes by which new payment models are developed for public programs, and the form that they take.”
According to Roundtable participant Marc Boutin, CEO, National Health Council, “We should take advantage of the momentum for patient engagement in our public health programs while it is a focus of policymakers. These recommendations give a clear pathway to ensure that health care policy decisions consider the ‘Patient Trifecta’ including the patient’s experiential journey, their life aspirations and goals, and their clinical outcomes.”
“Whether they are challenged by mental illness, cancer or any other health condition, all patients benefit from a system that empowers them to participate in shared decision-making,” said Andrew Sperling, Director of Legislative Advocacy, National Association on Mental Illness (NAMI). “Our government policies should be working better to drive that patient participation.”
The panel recommended specific approaches for policymakers to take actions, including steps to
- Increase readiness among patients, beneficiaries and communities to engage.• Measure outcomes that matter to patients.
- Provide transparency to the patient about the policies and incentives that drive their treatment choices.
- Create a coordinating council of HHS agencies to share their experience with patient and beneficiary engagement.
- Increase accountability for beneficiary engagement in accountable care organizations and other alternative payment models.
“I am proud to have been a part of this important exercise,” stated Cynthia Bens, Vice President, Public Policy, Alliance for Aging Research, “and I hope it leads to the implementation of real policies by government and non-government actors to encourage and embrace the patient voice in decision making.”
Participants in this roundtable:
- Dr. Kristin Carman, Vice President, Health Policy Research, Health and Social Development Program, American Institutes for Research (AIR)
- Ms. Sally Okun, Vice President, Advocacy, Policy & Patient Safety, PatientsLikeMe
- Ms. Caitlin Morris, Senior Policy Analyst, FamiliesUSA
- Dr. Josh Seidman, Vice President, Payment and Delivery Reform, Avalere Health
- Mr. Marc Boutin, CEO, National Health Council
- Mr. Dario Dieguez, Research Project Manager, Epilepsy Foundation
- Mr. Andrew Sperling, Director of Legislative Advocacy, National Alliance on Mental Illness
- Ms. Jennifer Bright, Partner, Momentum Health Strategies
- Dr. Clarke Ross, Public Policy Director, American Association on Health and Disability
- Ms. Cynthia Bens, Vice President, Public Policy, Alliance
- Ms. Sara Skubikowski, National Patient Advocate Foundation
- Ms. Donna Cryer, CEO, Global Liver Foundation
- Mr. Jose Fernandez, Men’s Health Network
- Ms. Ivonne Fuller Cameron, CEO, Hepatitis Foundation International
- Dr. Eleanor Perfetto, Professor of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy
- Ms. Sara van Geertruyden, Executive Director, Partnership to Improve Patient Care (PIPC)