PHP184 - How Patient Organizations are Using Patient-Reported Outcomes: Survey Results from a Non-Probability Sample of Patients Count Network Members

Abstract

FasterCures works with patient organizations, across diseases and conditions, to drive implementation of patient-centered medical product development and care delivery. This study aimed to understand how patient organizations, specifically members of the FasterCures’ Patients Count Network, are using patient-reported outcomes. The survey aimed to capture the PRO-related activities underway, their intended uses and strategic partnerships. The study employed a non-probability, purposive sampling approach from a registry of patient organizations. Questions allowed for more than one response. The survey response rate was 30% (42/142) with the majority (73%) indicating they are working with/developing PROs. Reasons for not working with PROs included resource limitations (n=4), focus on basic science/other scientific domains (n= 4), and not relevant for condition at this time (n= 3). Only one patient organization indicated that the existing PRO fit their needs. Multiple uses were reported: identifying outcomes relevant to patients (27/30); developing surveys to capture PROs (21/30); implementing PROMs through registry/other means (18/30); gathering qualitative/interview data to feed into PROM development (16/30); integrating PROs into clinical care contexts (16/30). The intended uses of patient perspective data included: enriching the understanding of disease burden (27/30), understanding the patient journey (26/30), identifying/documenting areas of unmet medical need (25/30), understanding patient preferences (25/30), understanding/documenting the natural history/disease course (23/30), identifying subgroups of patients (19/30). Multiple stakeholders included researchers (24/30), clinicians (18/30), other patient organizations (17/30), medical product developers (16/30), and registry platforms (14/30). Patient organizations are participating in multiple ways to advance the development and use of PROs. They indicated many uses for PROs and are partnering with different organizations/stakeholders to accomplish their work. As a key stakeholder, patient organizations are positioned to work within and across diseases, and may be an under-recognized driver of the development and use of patient-centered measurement.