Improving the Use of Patient-Provided Information in Real-World Evidence Research

Study Objective

  • To understand how patient-provided information (PPI) – gathered through meaningful patient engagement – can be translated by researchers into more patient-centered real-world data (RWD) research designs that reflect patients’ lived experiences.
  • To develop a set of good-practice principles that can be disseminated to various real-world evidence (RWE) stakeholders.


Patient-Provided Information (PPI): broadly encompasses the entirety of information that can be collected from an interaction with a patient. The focus should be the patients view on their disease(s)/condition(s), desired attributes for treatments, experiences with treatments, benefit- risk preferences, and desired goals and outcomes.

Real-world data (RWD) and Real-world evidence (RWE): Data and data-derived interpretation that is based on sources other than conventional, randomized, controlled studies and offers insight to clinical, coverage, payment, and patient decisions.

  • Wendy Smith Begolka, MBS, Director of Research, National Eczema Association
  • Jennifer Bright, MPA, Executive Director, Innovation and Value Initiative
  • Mehmet Burcu, PhD, MS, Assistant Principal, Center for Observational & Real World Evidence (CORE), Merck & Co.
  • Angeline M. Carlson, BS, RPh, PhD, Principal, DataIQ
  • Robert W. Carlson, MD, Chief Executive Officer, National Comprehensive Cancer Network
  • Julia McBeth, Research & Advocacy Manager, Celiac Disease Foundation
  • Debbe McCall, MBA, Patient PI on Health eHeart Alliance Patient-powered Research Network
  • C. Daniel Mullins, PhD, Professor & Chair Pharmaceutical Health Services Research Dept., University of Maryland School of Pharmacy
  • Prasun Subedi, PhD, Senior Director, Center for Health Systems Innovation & Leadership, Pfizer
  • Patrick Wildman, Vice President, Advocacy & Government Relations, Lupus Foundation
  • Richard Willke, PhD, Chief Science Officer, International Society for Pharmacoeconomics & Outcomes Research (ISPOR)
  • Marcus D. Wilson, PharmD, President HealthCore

Get Involved

For more information, email the NHC Programs Team.