The National Health Council (NHC) is pleased to provide comments on the Institute for Clinical and Economic Review’s (ICER) solicitation for feedback on the 2020 Value Assessment Framework. Founded in 1920, the NHC is the only organization that brings together all segments of the health community to provide a united voice for the more than 160 million people in the United States with chronic diseases and disabilities, and their family caregivers. Made up of more than 125 diverse national health-related organizations and businesses, the NHC's core membership includes the nation’s leading patient advocacy organizations, which control its governance and policy-making process. Other members include health-related associations and nonprofit organizations including the provider, research, and family caregiver communities and businesses representing biopharmaceutical, device, diagnostic, generic, and payer organizations.
Both ICER and the NHC share a mutual goal of promoting increased access to affordable, high-value, sustainable health care. While important progress has been made, there is still significant work needed to fully integrate the patient voice into value assessment.
In July 2018, the NHC held a dialogue meeting of patients and patient groups with US value assessment (VA) bodies to articulate a shared vision for what marks success in patient-centered VA and to discuss what patient groups and value assessors can do, individually and together, to make value assessment more patient centered. We are pleased to note that ICER participated in that dialogue. Patient groups and VA bodies agreed: the ultimate goal of patient-centered VA is for patients to have access to treatments they need at prices they can afford. Patient-centered VA exists when patients have been engaged, heard, understood, and respected throughout the entire process, and their input is incorporated and guides decision-making. Several of our suggestions below come from the recommendations we arrived at that day, and we hope you will consider them. The full report can be found on our website.