Advice for the Next Administration: Equip Patients and Families as Partner Stakeholders in Health Policy

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Sep 19, 2016, 12:05 ET

WASHINGTON, Sept. 19, 2016 /PRNewswire-USNewswire/ -- The National Health Council (NHC) was among 100 thought-leaders to provide expert guidance on 19 priority focus areas for strengthening U.S. health policy as part of the National Academy of Medicine (NAM) Vital Directions for Health and Health Care initiative.

NAM commissioned expert papers on the focus areas to address "the unprecedented challenges — and extraordinary opportunities — the incoming presidential administration must weigh as it charts the next steps for health reform in the United States." NHC Chief Executive Officer Marc Boutin was a co-author of the discussion paper titled Innovation in Development, Regulatory Review, and Use of Clinical Advances, which addresses the importance of enhancing patient engagement.

"Patient input can help greatly to identify unmet needs and set research priorities by influencing end-point selection and clinical-trial design and conduct; this will result in easier and faster clinical-trial recruitment, less burdensome trials, and the evaluation of outcomes relevant to patients," the paper stated. The authors stressed the need to accelerate progress toward real-time evidence generation; invest in and apply the promise of cognitive computing; and position and equip patients and families as partner stakeholders.

Priority considerations for increasing patient engagement in developing new treatments include:

Strengthening and expanding initiatives for patient engagement, such as those under way at the Food and Drug Administration (FDA) Center for Drug Evaluation and Research and the Center for Devices and Radiological Health.
Continuously evolving the FDA's Patient-Focused Drug Development program to create opportunities for patients and patient organizations to provide their perspectives to FDA.
Convening FDA and stakeholders, including the patient community, to establish methods for gathering and using patient input in drug development.
Clarifying how FDA will evaluate and measure patient preferences and incorporate them into regulatory assessment.
Helping to educate the patient community about drug development, regulation, and insurance coverage and about mechanisms for participating in patient-engagement efforts.
Convening the Centers for Medicare and Medicaid Services and stakeholders, including the patient community, to gather input for assessing the "value" of new medications and the implications for drug coverage and reimbursement.

The discussion papers represent only the first phase of the Vital Directions initiative. On September 26, NAM will host a free public symposium, Vital Directions for Health and Health Care: A National Conversation, at its headquarters in Washington, DC. A live video webcast will also be available. Boutin will be part of a panel discussion on high-value health care.

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