Educational Series #3: Incorporating Patient Voices into Medical Affairs Communications
Authored by Arlene Marie Karole, Patricia Hanrahan
The HBA Patient Centricity Affinity Group (PCAG) is excited to share highlights of “Incorporating Patient Voices into Medical Affairs Communications” held on Thursday, December 5, 2024. As the 3rd event in the series, it was designed to support HBA members’ continued knowledge development in understanding patient centricity and how to apply the principles to our current healthcare business roles. An impressive global attendance joined from the U.S. and beyond—including San Diego, California, Washington, D.C., London, U.K., and Frankfurt, Germany.
The Executive Team’s 2025 Vision
The HBA Patient Centricity Affinity Group’s Chairperson, Dorothea Sanchez, kicked off the program noting the group's 2024 achievements and sharing the 2025 vision, outlining goals and reiterating the group’s commitment to empowering its members by fostering leadership growth through a steadfast focus on the patient experience as a comprehensive and core business model.
Program Overview
Director of Programming and moderator, Trish Hanrahan, introduced the expert panel of speakers representing MAPS (Medical Affairs Professional Society): Tricia Gooljarsingh, VP, Medical Affairs, X4 Pharmaceuticals; Gavin Jones, Patient Engagement Lead, Lumanity; Alia Bucciarelli, Sr. Director Medical Affairs, Vertex Pharmaceuticals and Tracy Hart, CEO, Osteogenesis Imperfecta Foundation.
Tricia Gooljarsingh
VP, Medical Affairs, X4 Pharmaceuticals
Alia Bucciarelli
Sr. Director Medical Affairs, Vertex Pharmaceuticals
Gavin Jones
Patient Engagement Lead, Lumanity
Tracy Hart
CEO, Osteogenesis Imperfecta Foundation
This MAPS encore presentation highlighted the role of the Medical Affairs Department and the opportunity to integrate the patient voice into their strategies, communications, publications, and educational materials. Tricia Gooljarsingh, VP, Medical Affairs, X4 Pharmaceuticals, emphasized that patient-centricity is more than an initiative—it is a cultural mindset. She commented while partnering with patients and patient organizations which are often led by medical affairs teams, it’s important to establish an organizational approach.
Gavin Jones, Patient Engagement Lead, Lumanity, added that engaging patients as early as possible before designing clinical trial programs—allows for a deeper understanding of disease burden and unmet needs, which can strengthen the foundation of evidence. Additionally, organizations must anticipate and address the expectations of the patient community as potential treatments emerge. Proactively managing these expectations is critical to maintaining trust through thoughtful and sustained engagement.
Communicating with Patients:
Tracy Hart, CEO, Osteogenesis Imperfecta Foundation, shared a patient advocacy perspective "Patient communities are diverse, and early engagement is crucial. Some are clinical trial-ready, while others require education on the process. Understanding each community’s communication, and unique identity and partnering with pharmaceutical companies is essential for meaningful collaboration. She reinforced that incorporating patient advocacy helps break down barriers to understanding and access, ensures diverse voices are heard, and promotes equity in healthcare messaging and decision-making.
It is key to incorporate patient voices into medical affairs communications which transform data into relatable narratives while adhering to regulatory and ethical frameworks. Patient stories bridge the gap between clinical evidence and human experience, creating an emotional resonance that fosters trust and understanding among healthcare providers, patients, pharmaceutical companies, and other stakeholders.
Creating Patient Materials:
Alia Bucciarelli, Sr. Director Medical Affairs, Vertex Pharmaceuticals, offered how to create patient materials “Many adults struggle with health literacy, especially vulnerable groups such as racial-ethnic minorities, the elderly, and those with lower education. Poor health literacy leads to worse outcomes, including higher mortality, chronic disease, and emergency care use. Co-creating content and using plain language principles are essential for effective patient materials.”
Tips for Writing Patient Centric Materials:
MAPS Patient Centricity FAWG. (2024). “Developing and Timing of Scientific Communications That Are Meaningful to Patients (PowerPoint slide).”
Resources:
- Envision the Patient, Toolkit (Alia Bucciarelli)
- Benchmarking Organizational Preparedness and Capabilities to Support Patient Engagement in Drug Development (Tricia Gooljarsingh)
- Patient-Focused Medicine (Gavin Jones)
- A Framework for Equity-Centered Health Communication
- The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide
What Attendees Said?
“Attending my first patient-centricity meeting with the HBA has been an inspiring experience. It reinforced the importance of listening to patients’ voices and collaborating to create solutions that truly make a difference in their lives. I’m proud to be part of a community dedicated to putting patients at the heart of everything we do.”
Rebecca Starkie, Patient Engagement Specialist, United Kingdom
“I am a clinician and work directly with patients. So patient centricity is everything to me. It was interesting for me to join a session on this subject as I appreciate that when you work for bigger companies you are not directly connected to patients. This lack of immediacy and intimacy makes it hard to appreciate the impact your work has on them. Finding ways to focus on patient centricity allows one to keep the big picture in mind.”
Dr. Manna Semby, ND, MSCP, IFMCP
Grateful Acknowledgment
Our deepest gratitude to our speakers for dedicating their time and sharing their expertise, transforming this program into a truly dynamic and inspiring event.
Great appreciation to the HBA Patient Centricity Affinity Group team who made this event possible including Dorothea Sanchez, Jenny Sheng, Patricia Hanrahan, Michele Gaudet-Smith, Chiara Castellarin Janine Welen, and Arlene Marie Karole.
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Meet Our Team: HBA Patient Centricity Affinity Group Directors
