Beyond Claims and EHRs: Social Media as Real-World Evidence to Uncover Patient Experiences and Unmet Needs

Moderator

Min-Hua Jen, PhD, Eli Lilly, Uxbridge, United Kingdom

Speakers

Chao Song, UCB, Duluth, GA, United States; Abeed Sarker, PhD, Emory University, Decatur, GA, United States; Lixia Yao, PhD, Temple University, Chalfont, PA, United States

PURPOSE: Patients increasingly share experiences, treatment feedback, and concerns on social media and online health communities, creating a rich, real-time data source now recognized by the FDA in its Patient-Focused Drug Development: Methods to Identify What Is Important to Patients (2022). Advances in natural language processing (NLP), particularly large language models (LLMs) such as ChatGPT, enable scalable analysis of this unstructured content, uncovering insights into patient experiences and unmet needs often missed by traditional methods. This 60-minute workshop aims to build awareness and practical competence in social media listening (SML) and equip participants with strategies to leverage digital patient narratives. By the end of the session, attendees will understand the strengths and limitations of SML, and what state-of-the-art NLP and LLM technologies offer. Participants will also learn how and when to apply these approaches to transform patient voices into actionable insights that inform drug discovery, development, and value assessment. DESCRIPTION: Grounded in the FDA’s 2022 guidance, which explicitly recognizes social media as a valid source of qualitative and quantitative patient experience data, this session will provide an overview of SML methods and applications, addressing key considerations such as study design, data quality, and privacy through real-world examples. Dr. Jen will introduce the topic in the context of patient-centered drug development and traditional evidence sources (5 min). Dr. Song will discuss how SML addresses evidence gaps in rare diseases from a HEOR perspective (10 min). Dr. Sarker will present state-of-the-art NLP/LLM techniques for SML (15 min). Dr. Yao will share two real-world applications involving vaccines and chronic autoimmune disease (15 min). The session concludes with an interactive panel, enabling audience engagement through QR code-based polling and discussion (15 min). By combining regulatory context, technological innovation, and practical case studies, this workshop offers a roadmap for integrating SML into patient-focused drug development programs.

Topic

Health Service Delivery & Process of Care, Health Technology Assessment, Real World Data & Information Systems

Your browser is out-of-date

ISPOR recommends that you update your browser for more security, speed and the best experience on ispor.org. Update my browser now

×