ArticleFrontiers in medicine2024
Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.
Article in Frontiers in medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
15 citing papers in PubMed, 19 citations in OpenAlex.
- Assessing Efgartigimod (VYVGART™) Social Media Posts in Generalized Myasthenia Gravis to Understand Patient, Caregiver, and Health Care Professional Sentiments.Neurology and therapy · 2026Article
- Informational needs in vulvar cancer and precursor conditions: a social listening study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Exploring the Experiences and Perspectives of Patients With Early Breast Cancer, Caregivers, and Health Care Professionals: Italian Social Media Listening Study.JMIR cancer · 2026Article
- Empowering AI assisted clinical drug development: tactics to address data bias, the digital divide and missing patient populations through AI and digital solutions.Frontiers in digital health · 2026Review
- Authentic content as an effective mechanism for embedding patient voices in health innovation: a hypothesis and conceptual framework.Frontiers in health services · 2026Article
- Patient perspectives on life impact and unmet needs in giant cell arteritis and polymyalgia rheumatica: insights from social media.Rheumatology advances in practice · 2026Article
- Mental Health Experiences and Challenges Among Individuals with Myasthenia Gravis: Insights from Patient-Centered, Qualitative Analyses.Advances in therapy · 2025Review
- Understanding the Real Needs and Expectations of French Patients with Amelogenesis Imperfecta Through Facebook Content: A Qualitative Thematic Analysis.Healthcare (Basel, Switzerland) · 2025Article
- Social Listening as a Tool to Understand Nutrition-Related Information Needs: A Case Study in Inflammatory Bowel Disease.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025Article
- Summarizing Online Patient Conversations Using Generative Language Models: Experimental and Comparative Study.JMIR medical informatics · 2025Article
- Emerging trends in patient experience data: Perspectives on the 2024 AMCP Foundation Survey.Journal of managed care & specialty pharmacy · 2025Article
- The experience and impact of living with idiopathic hypersomnia: A qualitative study of patient perspectives shared in online media.PloS one · 2025Article
- Best practices for the collection and analysis of patient experience data from social media for patient-focused drug development.Frontiers in medicine · 2025Review
- Insights Into the Patient Experience of Hormone Therapy for Early Breast Cancer Treatment Using Patient Forum Discussions and Natural Language Processing.JCO clinical cancer informatics · 2024Article
- One size fits all: Enhanced zero-shot text classification for patient listening on social media.Frontiers in artificial intelligence · 2024Article
Corrections and comments
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Authors and funding
13 authors at 5 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patients, life science industry and regulatory authorities are united in their goal to reduce the disease burden of patients by closing remaining unmet needs. Patients have, however, not always been systematically and consistently involved in the drug development process. Recognizing this gap, regulatory bodies worldwide have initiated patient-focused drug development (PFDD) initiatives to foster a more systematic involvement of patients in the drug development process and to ensure that outcomes measured in clinical trials are truly relevant to patients and represent significant improvements to their quality of life. As a source of real-world evidence (RWE), social media has been consistently shown to capture the first-hand, spontaneous and unfiltered disease and treatment experience of patients and is acknowledged as a valid method for generating patient experience data by the Food and Drug Administration (FDA). While social media listening (SML) methods are increasingly applied to many diseases and use cases, a significant piece of uncertainty remains on how evidence derived from social media can be used in the drug development process and how it can impact regulatory decision making, including legal and ethical aspects. In this policy paper, we review the perspectives of three key stakeholder groups on the role of SML in drug development, namely patients, life science companies and regulators. We also carry out a systematic review of current practices and use cases for SML and, in particular, highlight benefits and drawbacks for the use of SML as a way to identify unmet needs of patients. While we find that the stakeholders are strongly aligned regarding the potential of social media for PFDD, we identify key areas in which regulatory guidance is needed to reduce uncertainty regarding the impact of SML as a source of patient experience data that has impact on regulatory decision making.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.