Building the Foundations of Patient Advocacy, Mary Pomerantz
Mary Pomerantz, Senior Director of Patient Advocacy & Engagement at Cytokinetics, shared her experience building the patient advocacy function at the biotech company at November's COG West Coast meeting.
She discussed various definitions and types of healthcare advocacy, ranging from individual to community, systems, and corporate advocacy. Mary outlined guiding concepts central to patient advocacy, including principles of patient centricity where patients are viewed as experts and equal partners, as well as best practices for partnerships based on mutual benefit, respect, and co-creation.
Detailing how Cytokinetics started with her as the first dedicated patient advocacy role within Corporate Affairs, Mary described crucial components she helped institute, like Patient and Caregiver Advisory Councils that integrate patient input. She emphasized the importance of extensive cross-functional collaboration across the organization, working hand-in-hand with departments like clinical operations and research. Other vital building blocks have been establishing compliance guardrails and elevating patient voice through channels such as speaker programs.
Ultimately, Mary explained, the dual goals of the patient advocacy function are to amplify patient community interests outside the company while supporting patient centricity initiatives internally, all aiming to deliver accessible solutions that improve patient and caregiver lives. She provided examples of patient engagement in clinical research, from input into study design to exit interviews from trials.
Authentic partnerships and equitable patient engagement requires embracing patient expertise, meeting patients where they are, and co-creating solutions.
Language matters; avoid labeling language and engage patients as advisors and partners.
Build cross-functional partnerships, integrates patient input through channels like advisory councils, and create feedback loops.
Patient advocacy aims to amplify external community interests and support internal patient centricity for better solutions and outcomes.