Enriching Real-World Data Sets With Insights from Online Communities for a Robust Understanding of the Patient Experience

Author(s)

Valerie Powell, MS, Patient Experience, CorEvitas, LLC, Waltham, MA, USA, Clare Jacklin, n/a, National Rheumatoid Arthritis Society, Maidenhead, UK and Lucinda Orsini, DPM, MPH, COMPASS Pathways, Skillman, NY, USA

Presentation Documents

This session will explore online patient communities as a research methodology to supplement data from traditional real-world sources, such as registries, EMR, and claims data.

Online patient communities are a trusted source of information and support for patients living with health conditions. They also provide a rich source of patient-reported data, which can be used to enrich the data available from other real-word sources.

In this session, we will explore research methodologies that can be utilized within communities, and how this data can be analyzed to create a robust picture of the patient lived experience, QoL, and healthcare behaviors.

The session will begin with an overview of the use of community data to enrich other RWD. Then, 3 experts with deep experience in the use of online health communities will share their knowledge, experiences, and viewpoints.

First, the Chief Patient Officer of an organization that hosts online patient health communities will share practical aspects of conducting this innovative research and how organizations have applied the results. An executive at a biopharmaceutical company will join us; his company is utilizing an online patient community for insights to guide its R&D program in mental health. Finally, a representative of a Patient organisation that moderates a community will discuss the benefit to both researchers and patients. These specialists will share their viewpoints on the value of online patient community data and how its use can supplement traditional real-world data collection methods to provide a complete picture of the patient experience.

The session will be highly interactive. Audience members will participate by completing a worksheet to design their own community interaction/research event, as well as hold partner discussions and debates on the utility of this type of data. We will complete the session with open Q&A with audience members and our panelists.

Conference/Value in Health Info

2022-11, ISPOR Europe 2022, Vienna, Austria

Code

305

Topic

Patient-Centered Research

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