Pistoia Alliance publishes first best-practice framework for ethical social media use in drug development

Pistoia Alliance publishes first best-practice framework for ethical social media use in drug development

Alliance calls for funding and expertise for the next phase of its social media project, marking its first direct engagement with oncology, rare disease and cardiology patients

Boston, US, 25^th March 2026: The Pistoia Alliance, a global, not-for-profit alliance advancing collaboration in life sciences R&D, is launching new patient research to shape the ethical use of social media listening in drug development, as part of its Social Media Real-World Evidence (RWE) project. Marking an evolution in the Alliance’s work, the study marks the first time the Alliance has directly engaged patients as it expands its advocacy into clinical fields. The patient research follows the project group’s publication of a peer-reviewed paper in Frontiers in Medicine, which provides a best practice framework for pharmaceutical companies seeking to use social media data in a consistent and ethically governed way. The paper was developed by experts from Bayer, Roche, Boehringer Ingelheim, Chiesi and Semalytix.

In parallel, the project team has developed a decision-support questionnaire, “Pomelo,” designed to help pharmaceutical companies assess whether and how social media listening should be used in real-world data initiatives. The tool has been accepted for presentation at ISPOR 2026, the leading international conference for health economics and outcomes research, and will also be presented at the Pistoia Alliance’s Spring Conference in London on 14 April. It will be published on the Alliance’s website following the conference.

“Social media is a vital channel for patients to share real-world experiences of their symptoms, expectations and unmet needs. Compared to structured clinical trial data, social media offers more immediate and unfiltered insight. This data is already being explored in marketing and pharmacovigilance, but its application in drug development remains an emerging area,” said Thierry Escudier, Portfolio Lead at the Pistoia Alliance. “Advances in AI and natural language processing mean we can now make sense of unstructured social media conversations, creating an opportunity to inform drug development responsibly – provided it’s done with the right standards in place.”

The paper analyzed published social media listening research to establish best-practice guidance for drug developers, including guidance on:

• Ethical and transparent data use: how to use publicly available data with strong safeguards around anonymization.
• Study design and governance: recommendations on understanding bias and limitations.
• Data collection and analytics: best practices for source selection, handling unstructured data, and applying advanced analytics and AI techniques in a reproducible way.

“Social media plays a vital role in connecting patients who might otherwise never meet, particularly within small patient populations such as rare diseases,” said Zorana Maravic, executive director at Digestive Cancers Europe. “Ensuring that patient voices are respected, protected and used appropriately in research is essential if this data is to genuinely benefit patients and help improve future treatments. Initiatives like the Alliance’s demonstrate how collaboration can turn the patient voice into meaningful progress.”

The patient phase of research is approved by the German Ethics Council and will begin in March 2026 with 54 patients from US, Spain and Germany across oncology, rare disease and cardiology communities. The goal is to ensure methods for collecting and analyzing social media data reflect real patient expectations, priorities and concerns. Following the first cohort, the project group plans to run a larger quantitative study involving 300-400 patients, and is calling on regulators and pharmaceutical companies to support this expansion.

“Undertaking patient research represents a shift in how the Pistoia Alliance approaches collaboration in the clinical space. Our project team works closely with pharmaceutical companies to establish robust, evidence-based methods for social media listening. Now, by engaging patients, we’re moving beyond theory into practice – testing assumptions, understanding concerns and building trust,” comments Aditya Tyagi, Project Manager at the Pistoia Alliance. “This research gives patients a direct role in shaping the methods and safeguards that will govern future use of their data. To scale this work and validate it across larger patient populations, we need regulators and industry partners to engage even further with us and support the next phase.”

To get involved, please contact ProjectInquiries@PistoiaAlliance.org. For more information on the Pistoia Alliance, visit https://www.pistoiaalliance.org/