Advancing Comparative Clinical Effectiveness Research: Putting Patients and People with Disabilities at the Center of the Value Discussion

On December 16, 2020, PIPC convened patient and disability experts to discuss how we advance comparative clinical effectiveness research as a solution for ensuring patients and people with disabilities are at the center of the value discussion. The program covered the historic opposition to metrics that discriminate in the United States, i.e. the quality-adjusted life year, or QALY, as well as the impetus behind Congressional authorization of the Patient-Centered Outcomes Research Institute (PCORI), its mandate to fund comparative clinical effectiveness research, and its new authorization to collect outcomes data that includes potential burdens and economic impacts for patients. As PCORI moves into its second decade, we look forward to fostering a better understanding of its work.

At the end, PIPC facilitated a discussion among patient and disability experts reacting to the presentations, answering your questions and challenging us all to view policies debated in 2021 through the lens of achieving health equity. 

Resources:

National Council on Disability Report: Quality-Adjusted Life Years and the Devaluation of Life with Disability
Traditional Value Assessment Methods Fail Communities of Color and Exacerbate Health Inequities
Value for Whom? Incorporating Patient Perspectives into Value Assessment for Novel Cell and Gene Therapies
What is a QALY?
PCORI Primer  
Value Our Health Advocacy Toolkit
PIPC White Paper: Targeted Literature Review on Patient-Centered Cost Outcomes

Live Panelist Bios:
Kelly Buckland
Rachel Patterson
Dr. Gary Puckrein
Andrew Sperling