How Patient Involvement Gets Done to Better Support Access, Decision-making and Medicine Development: Patients as Partners 2025 Recap

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Marking 12 years of the Patients as Partners in Clinical Research conference, senior leaders in pharma R&D, the FDA and patient advocacy presented examples of progress in how patient involvement leads to greater access and efficiencies in clinical trials and better health outcomes. 

On Day One, the program opened with a caregiver fireside chat with Dr Justin Hopkin, who talked about the journey to find care and a clinical trial for his young son after a rare disease diagnosis, and the impact of a clinical trial on his family. Amicus Therapeutics’ Chief Patient Advocate Jayne Gershkowitz took the stage to discuss how they had threaded patient advocacy throughout the organization and gave her advice for others looking to do the same. 

A panel of patients and caregivers provided the Patients as Partners attendees with valuable and frank insights on clinical trials, from eligibility criteria to improving accessibility, for future trial optimization. Novo Nordisk Rare Disease’s Dr Ify Osunkwo spoke about how her organization partners with patients and advocacy groups to optimize trial protocols and recruitment approaches. 

On Day Two, Astellas’ Dr Anthony Yanni showcased the critical business rationale for how patient-centric development is essential for remaining competitive and driving meaningful change. Pfizer’s Melinda Rottas talked about the organization’s infrastructure for embedding the patient voice in clinical trial operations. There were panel discussions on sustaining patient engagement initiatives amid company reorganizations and partnering with sites to address clinical trial challenges. 

For Day Three, Tufts CSDD’s Kenneth Getz presented data on how the implementation of patient engagement practices was essential for ensuring the long-term economic viability of drug development. The Chief Patient Officers of Novo Nordisk and Parexel, Liselotte Hyveled and Stacy Hurt, respectively, participated in a fireside discussion on the role of the Chief Patient Officer in aligning patient advocacy with business objections and operational execution. Representatives of the FDA returned to discuss guidance updates, new patient engagement initiatives, and past relevant workshops.

Speakers presented on: pharma and advocacy collaborations; early patient engagement; representation in clinical trials; community engagement; operationalizing and scaling engagement; innovative solutions and technologies that enhance patient-enabled trials; AI; digital/mobile technologies; DCTs; measuring the value of patient engagement; site-level diversity; end-to-end patient insights; and shaping digital endpoints. 

The event included panel discussions, interactive sessions and roundtable discussions on: designing solutions across healthcare pathways by understanding patient experiences; reducing patient burden; AI in patient engagement; establishing and implementing SOGIIS data collection; enhancing health literacy; refining advocacy group collaborations; early phase patient engagement strategies; laying the foundation for effective representation in clinical trials; and engaging patients in payer and CMS decisions. 

We are pleased to share these highlights from Patients as Partners in Clinical Research 2025. A big thank you to everyone who participated in this year’s event. Enjoy this special recap.