The return of individual data to clinical trial participants as a means of patient empowerment was once again featured at the annual Patients as Partners in Clinical Research US Conference, which took place in Philadelphia, Pa, on March 20-22nd.
The theme of this 3-day event focused on a multitude of real-world examples shared by global peers across Pharma R&D, FDA, and patient advocacy, showcasing the active implementation of patient involvement and partnership to enhance efficiency, improve outcomes and patient experiences in clinical research.
The second-day panel on “Patient Data Access, Proactive solutions for Personalizing Individual Data Return in Clinical Trials”, chaired by Jean Stimola-Sposaro, BMS,provided FACILITATE with the opportunity to present its proposal in the European arena within the session “Patient Experience Data & Returning Data to Patients”, remarking again on how this young European IHI-project has so many commonalities with well-established US experiences such as TransCelerate, MRCT and Pfizer initiatives on patients’ data return.
The panel, which was attended by over 100 in person participants, included a conversation on how FACILITATE is working with TransCelerate and MRCT to maximize the global impact of a collective work and mutual objectives for patients.
Particularly poignant was a talk by a patient who participated in several clinical trials as a child and in adulthood. The woman, who is also BMS’s Global Patient Engagement and Recruitment Lead and has contributed to several TransCelerate initiatives, shared her emotional story of how the non-receipt of individual health and study data affected her choices and health outcomes throughout her life.
In the same day David P Leventhal, Senior Director, Data Sharing & Disclosure Lead in Pfizer and partner of FACILITATE and TransCelerate, presented on “Crafting an effective Clinical Data Sharing Solution: Insights from Pfizer’s Patient Data Return Initiative”, underlining the close cross-collaboration between FACILITATE, MRCT and TransCelerate.
At the end of the three days of meetings and presentations, participants agreed that the conference achieved its goal of identifying what, where, when, and how to measure the social impact of patient engagement to address their unmet needs , improve flexibility in trial options, and close gaps in underrepresentation. Finally, the opportunity to schedule personal #AskthePatients sessions has been viewed as an essential part of the program, where patient advocates provided diverse and valuable insights into their health experiences.
