Pistoia to publish guide to pharma firm social media listening
28 Mar 2026
The Pistoia Alliance is for the first time engaging health patients in its research, in order to aid its new research into the ethical use of social media listening by drug developers.
Project manager Aditya Tyagi stated: “This research gives patients a direct role in shaping the methods and safeguards that will govern future use of their data.”
The Alliance’s Social Media Real-World Evidence (RWE) project has already produced a peer-reviewed paper, intended as a best practice framework for pharmaceutical firms seeking to employ data “in a consistent and ethically governed way” said the organisation.
Published in Frontiers in Medicine, the guide was advised by experts from leading companies including Bayer, Roche, Boehringer Ingelheim, Chiesi and Semalytix, working on behalf of the global, not-for-profit alliance dedicated to life sciences collaborations.
To accompany the work, the project team has created the ‘Pomelo’ questionnaire, to offer a checklist to pharmaceutical companies assessing when and how to use social media listening for their data initiatives.
It will be formally presented at international conference for health economics and outcomes research ISPOR 2026 and at the alliance’s Spring Conference in London on 14 April. Afterwards, it will be made available to view on the organisation’s website.
“Compared to structured clinical trial data, social media offers more immediate and unfiltered insight,” said Pistoia Alliance portfolio lead Thierry Escudier.
“This data is already being explored in marketing and pharmacovigilance, but its application in drug development remains an emerging area.”
He added that advances in AI and natural language processing made analysis of unstructured social media conversations possible, so now these could be harnessed to inform drug development.
Pistoia’s published paper incorporated guidance on using publicly available data with strong safeguards around anonymity, understanding of bias and limitations, plus best practices for source selection, unstructured data, as well as applying advanced analytics and AI techniques in reproducible fashion.
The next phase involving patients and approved by the German Ethics Council, will begin this month (March) using 54 individuals based in the US, Spain and Germany across the oncology, rare disease and cardiology communities.
Afterwards, there will be a larger quantitative study involving 300-400 patients.
Added Tyagi: “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.”
Those wishing to be involved in the project are invited to contact the Pistoia Alliance here.
Pic: Julian
