Pistoia Alliance Launches New Community of Experts to Use Social Media Insights to Drive Patient-Centric Drug Development
Community will develop recommendations to leverage real-world data from social media to support patient-centric drug development
Boston, US, 17th November 2022: The Pistoia Alliance, a global, not-for-profit alliance that advocates for greater collaboration in life sciences R&D, has launched a new Community of Experts (CoE) to harness real-world data from social media. The COE aims to develop best practices and guidelines to use social media analysis as real-world data (RWD) for patient-focused drug development. The initiative was originally brought to the Alliance by member company Semalytix; the community is supported by representation from companies including AstraZeneca, Bayer, Biogen, Boehringer Ingelheim, Chiesi, Johnson&Johnson, EMD Serono and Roche. The Alliance is now calling for participation and funding from technology and data experts to help unravel the complexity of the social media environment and develop a framework for consistent use.
Social media poses an interesting and promising opportunity to listen to patients’ voices directly and in real-time, capturing unfiltered, first-hand data about the patient experience in large volumes. New guidance from bodies such as the FDA and the EMA acknowledges that online patient experience research is a powerful tool for collecting comprehensive and representative input for patient focused drug development (PFDD). As such, companies are increasingly using social media to produce Real-World Evidence (RWE). While there is a concise regulatory framework on many sources of RWE for drug approval and Health Technology Assessments (HTA), this guidance is lacking for social media. The Alliance recognizes that uncertainties surrounding regulatory validity and acceptability need to be mitigated for the data to be leveraged successfully.
“The increased presence of…