A Patient Advocate’s Perspective On Patient-Centered Comparative Effectiveness Research

Abstract

The Patient Protection and Affordable Care Act created a new phrase and concept: patient-centered outcomes research. The author of this commentary, who served as a member of the US House of Representatives from California, is also a patient with epilepsy and a patient advocate. He consulted with lawmakers in the passage of the health reform law. Here he draws on his varied experiences to provide perspective on how the law will provide the necessary policy framework for patient-centered comparative effectiveness research. Elements of that framework include the meaningful engagement of multiple stakeholders, most especially patients; acknowledgment of individual differences among patients and the importance of advancing personalized medicine; transparency and opportunities to participate; a broad, clinically focused research agenda; and the need to communicate results appropriately.