By Clinical Research News Staff 

November 22, 2022 | The Pistoia Alliance 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 patients and their communities on social media represent an opportunity for us to identify relevant knowledge for the drug discovery process with a specific focus on quality-of-life research. Social media listening offers one way to address the limitations of methods used traditionally in quality-of-life research. It complements our insights from these methods and helps us to focus on improvements in disease treatment which are the most relevant to patients” said Mathias Leddin, Principal Data Scientist for Biomedical Information at Roche in a press release.  

“State-of-the-art natural language processing has advanced to enable us to conduct retrospective online patient experience studies using social media as a way to inform product development activities. Current methods allow us to carry out such studies in a scalable fashion, capturing the voices of thousands of patients, to identify patients' unmet needs, concerns and priorities as well what would be meaningful improvements for them. What we need now is a framework and best practices to integrate such methods into regulatory decision making,” added Philipp Cimiano, Chief Technology Officer at Semalytix, in the same release.  

Developing a framework will require many different inputs. Patients do not communicate in medical terminology and often use colloquialisms. Additionally, platforms have different governance models for data sharing and access. The Alliance’s CoE proposes to collaborate on strategies to identify and resolve such issues to maximize the benefits of utilizing social media data and help develop better, more patient-centric treatments. 

“We are keen to get as much expertise as possible on this complex initiative, particularly RWD experts and technology companies. This data has the potential to be hugely insightful and impactful across the drug development pipeline, and critically, to patients themselves,” commented Thierry Escudier, CoE Lead at Pistoia Alliance. “The cross-disciplinary nature of this issue makes it perfectly placed for the Alliance to tackle. We have the ability to bring together both technology and domain expertise, under a legal framework for pre-collaborative collaboration, that will lead to tangible outcomes.” 

The Pistoia Alliance is calling on technology companies, data scientists and real-world data experts to join its Community of Experts. To get involved, please contact ProjectInquiries@PistoiaAlliance.org.