"It’s time to represent": Shifting the paradigm to improve the quality of inputs into value assessment frameworks

Abstract

“It’s Time to Represent” integrates 2 strategies that challenge the status quo to increase the diversity of populations that participate in research and address drivers of health disparities to better inform value assessment. The first, a community-engaged campaign, proposes to develop authentic, long-term partnerships with community members, their health care providers, and researchers to tailor recruitment and retention methods for underrepresented groups and hold researchers accountable for equitable selection of study participants. The second proposes to create an expectation for researchers to routinely collect patient-reported, actionable social determinants of health data to generate enhanced real-world evidence and thereby improve the quality of inputs utilized in value assessment frameworks.