Innovative Real World Experience (RWE) Generation: Supplementing Registry Data with Patient Community Input for in-Depth Patient Understanding
Author(s)
Powell V1, Hernandez-Barco YG2, Barkin JA3, AlKaade S4, Pannala R5, Decktor DL6, Twal J6, Frommer C7, Whitcomb DC8
1CorEvitas, LLC, Waltham, MA, USA, 2Massachusetts General Hospital, Boston, MA, USA, 3Univ of Miami, Miller School of Medicine Miami, Miami, FL, USA, 4Mercy Clinic, St. Louis, MO, USA, 5Mayo Clinic Arizona, Scottsdale, AZ, USA, 6Aimmune, a Nestle Health Science Co., Bridgewater, NJ, USA, 7CorEvitas, LLC, Arlington, VA, USA, 8University of Pittsburgh, Pittsburgh, PA, USA
Presentation Documents
A need to understand the patient experience in individuals living with exocrine pancreatic insufficiency (EPI) due to chronic pancreatitis (CP) is currently being realized through an innovative methodology that combines a disease registry and online patient community. The research is collecting insights into the clinical and emotional journey of these individuals. The first methodology, a registry, aims to understand unmet needs, therapeutic burden, how treatment decisions are made, and prescribing patterns of Pancreatic Enzyme Replacement Therapy (PERT). In parallel, the second methodology is an online community that allows researchers to gather patient experience insights that may not be shared with healthcare providers. Moderated by an advocacy group, this community allows patients and care partners to discuss their journeys and participate in research activities, adding qualitative insights to registry data. Prior to protocol and community development, market research was conducted to determine appropriate messages for communicating value and identify initial topics for community discussions. A scientific advisory board was formed to inform registry design, optimize data collection logistics, and provide guidance on community activities. At present, the registry is actively recruiting and enrolling patients. 240 participants are currently registered in the online community. In addition to moderated discussions, community members participated in 9 research events in 2021, with more events planned for 2022. Data from both methodologies will be analyzed and shared in peer-reviewed journals and at conferences. The addition of the online community to this broader research project has several advantages. Patients and care partners can openly discuss their condition in ways they may not with healthcare providers, adding patient experience insights to the clinically relevant registry data. Once both registry and online community are fully realized, the combined data will provide a more comprehensive picture of the EPI patient experience to describe a more complete, real-world patient journey.
Conference/Value in Health Info
2022-05, ISPOR 2022, Washington, DC, USA
Value in Health, Volume 25, Issue 6, S1 (June 2022)
Code
MSR42
Topic
Methodological & Statistical Research, Patient-Centered Research, Study Approaches
Topic Subcategory
Patient Engagement, PRO & Related Methods, Registries
Disease
Drugs