Innovation and Value Initiative Research Identifies Concrete Steps to Increase Patient Representativeness in Healthcare Research

Alexandria, VA — November 30, 2021 — The Innovation and Value Initiative (IVI), an independent, nonprofit research organization dedicated to advancing patient-centric value assessment, will present a research poster examining strategies for including under-represented patient populations in patient-centered healthcare research and participate two workshops at the Virtual ISPOR Europe 2021 this week.

The research post, Strategies to Include Underrepresented Patient Populations in Patient-Centered Research, describes the three-pronged approach undertaken by IVI, the University of Maryland School of Pharmacy, the LUNGevity Foundation, and Janssen Scientific Affairs to identify patient-informed criteria to improve patient representativeness in healthcare research. This poster will be presented on December 1st from 7:30 AM – 10:00 AM EST. The supporting research report can be found here.

“Our research identifies strategies on how the research community can move from talking about incorporating patients in research to actually doing it,” said Richard Xie, PhD, IVI’s HEOR Research Manager and lead author of the paper. “Improving patient-centered healthcare requires an iterative approach where research teams engage with diverse patient communities at the outset, establish clear metrics and guidelines, deliberately integrate findings, and communicate transparently to build trust and long-term relationships.”

On December 2nd at 5:00 AM EST, Richard Xie will participate in a workshop discussion, “Can we get more value from scientific knowledge spillovers? — The Under-appreciated Value of “Failed” R&D Efforts,” with Laura Magazzini, PhD, Associate Professor in Econometrics, Institute of Economics, Sant’Anna School of Advanced Studies; and Adrian Towse, MA, MPhil, Emeritus Director and Senior Research Fellow, Office of Health Economics. The discussion will be led by Lou Garrison, PhD, Professor Emeritus, the Comparative Health Outcomes, Policy, and Economics (CHOICE) Institute, University of Washington.

On December 2nd at 6:30 AM EST, Rick Chapman, PhD, IVI’s Chief Science Officer, will lead a workshop discussion, Novel Approaches to Identify and Quantify Patient Input for Health Technology Assessment (HTA), with Susan dosReis, PhD, Professor and Vice Chair for Research, Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy; Lori Frank, PhD, Senior Behavioral Scientist, RAND Corporation; and Julia Slejko, PhD, Associate Professor of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy.


About the Innovation and Value Initiative
The Innovation and Value Initiative is an independent, 501(c)3 nonprofit research organization that puts patients at the center of value assessment to advance the science, practice, and use of all health technology assessments. Patient-centricity, transparency, and open-source modeling are hallmarks of IVI’s value assessment approach. IVI conducts and funds research to improve scientific methods for value assessment; utilizes its transparent open-source modeling so value assessments improve equitable resource allocation; and convenes decision-makers across the healthcare spectrum to improve how assessments are used in the real world.