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​​​​​​​Demonstrating How Patient Engagement Gets Done: Patients as Partners in Clinical Research 2024 Recap

In this special report, we provide a summary of the highlights from the 11th annual Patients as Partners Conference.

April 25, 2024
​​​​​​​Demonstrating How Patient Engagement Gets Done: Patients as Partners in Clinical Research 2024 Recap

Marking 11 years of the Patients as Partners in Clinical Research conference, leaders in pharma R&D, FDA, and patient advocacy demonstrate how involving patients can enhance greater diversity, inclusion, decision-making and ultimately achieve greater efficiencies in medicine development. 

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On Day One, the program opened with the patient voice: advocate Irisaida Méndez not only spoke about how a clinical trial changed her life, but also illuminated the accompanying financial toxicities. Trailblazer Dr Roslyn Schneider, BioMarin, explored patient advocacy’s evolution to generate insights into strategies and best practices for the future

A diverse panel of patients/caregivers gave their takeaways for industry from navigating clinical trials, and provided insights to be applied for future progress. Attendees participated in an interactive session using the LEGO® SERIOUS PLAY® method to innovate around the patient experience in clinical trials, defining what successful engagement looks like, and how we can enhance collaborations in clinical trials. 

Representatives from different community-based organizations gave industry sharp insights to enhance clinical research initiatives. 

On Day Two, Dr Henry Wei, Regeneron, took the audience through Regeneron’s journey of letting science drive the organization’s patient-centric approach to drug development and operations. 

Linda Moir, an expert who led customer service excellence at Virgin Atlantic and the 2012 London Olympics, pulled from those experiences and gave the attendees lessons on high-value, low-cost customer service

Panel discussions focused on leveraging sustainability for patient engagement goals, and empowering clinical sites to streamline trials and enhance patient care. The Annual VIEW returned to challenge and address how we can truly reduce the burden to trial participants. 

For Day Three, Tufts CSDD’ Ken Getz presented new findings from their research on using an algorithm quantifying patient and site burden in clinical trials, and how this algorithm can be applied to inform protocol planning and design. 

Michael Zincone, Pfizer, introduced the organization’s Patient Advocacy Leadership Collective and showed how the resource provided connectivity, community resources, and tools for sustainable capacity building. 

BMS presented a novel case study on their work operationalizing the collection of self-identified Sexual Orientation and Gender Identity Data, a transformative industry approach to get a more holistic sense of who patients are. 

The conference concluded with five FDA officials representing different agencies presenting the latest guidance updates and their new patient engagement initiatives. 

Speakers presented on: impact measures; early engagement; operationalizing patient engagement; patient experience data & returning data to patients; DCTs, digital & mobile technologies; DE&I and community engagement; supporting DE&I, flexible clinical trials and patient services. 

There were panel discussions, interactive sessions and roundtable discussions on: 

optimizing advocacy-biopharma collaboration to transform medicine development’s pace; reducing patient burden; tackling implicit bias; strategic planning for recruitment excellence; leveraging social listening in rare and chronic diseases; establishing a patient-centric culture in biotechs; patient engagement insights in peer-reviewed publications; synergizing patient engagement and DE&I functions; and nurturing sustainable community relationships. 

We are pleased to share highlights from Patients as Partners in Clinical Research 2024. A big thank you to everyone who participated in this year’s event.


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