Advancing Models of Patient Engagement: Patient Organizations as Research and Data Partners

FasterCures, alongside other patient-focused advocacy organizations, has long worked with stakeholders such as product developers and regulators to define and implement the “how to” of patient engagement. This series, “Advancing Models of Patient Engagement: Patient Organizations as Research and Data Partners,” seeks to identify effective ways for research organizations of all types, including research data networks, to partner with patient organizations that can bring patients’ perspective, participation, and data to the table.

  • Part I of the series offers high-level framing of patient engagement issues and provides recommendations for patient organizations, researchers, and funders.

  • Part II of this series is intended to provide patient organizations that fund and engage in medical research with insight into and guidance related to their role as critical partners in this ecosystem, particularly as trusted intermediaries for the collection and aggregation of patient-generated health data (PGHD). 

  • Part III describes the patient organization ecosystem, lays out the types of PGHD that patient organizations may collect, and concludes with recommendations for researchers for effective and meaningful engagement with patients and patient organizations.

Published October 29, 2019