February 01, 2024
By NMQF Staff
Improving the health status of populations historically underrepresented in biomedical research (HUBR) has long been recognized as both a desirable and a feasible objective. Unfortunately, the indisposition of individual research sponsors to identify study cohorts of sufficient size and diversity to power statistically significant findings has stymied efforts to redress healthcare inequities for these populations. A paradigm shift is imperative. This includes a fundamental redesign of the American health services research, delivery and financing system so that it can assign value to the content and outcomes of healthcare for American children, American families, and American business.
The All of Us Research Program can be an invaluable resource in that endeavor. It has the potential to inform the efforts required to redress the fundamental misalignment between our past and our future. This report provides a summary of the presentations that created context for the meeting and the subsequent discussion. The issues and recommendations were synthesized from an extraordinary discussion. While far from exhaustive, we are pleased that in the relatively short amount of time the Roundtable was able to identify issues with both breadth and depth.
It must be noted, however, that many of the Roundtable discussants expressed qualified optimism throughout the meeting, giving the broken promises and unfulfilled possibilities of public and private initiatives that HUBR leadership have supported during the past 50 years. In addition to the specific recommendations outlined below, there was an overarching recommendation that fulfillment of the potential of the All of Us Research Program requires structured and continuous input and guidance from the clinical, advocacy and policy leadership that is committed to maximized, measurable health outcomes among populations that have historically not been included in biomedical research.
The National Minority Quality Forum and the Thought Leaders in Precision Medicine Roundtable are available to help assure the success of the All of Us Research Program.