Putting the Patient First

MassBio’s Third Annual Patient Advocacy Summit on Sept. 28, in Cambridge, Massachusetts, delivered inspiration and hope, tears and laughter. It also shined a spotlight on impactful patient storytelling — sharing insights into how to communicate, engage and focus on the No. 1 priority of improving the lives of patients.

As a communications professional in the health sector, I am always thinking about how we can use storytelling to drive innovation that will ultimately transform the industry and lead to life-changing cures. The Summit elevated key lessons that all storytellers and, frankly, all of us as patients, should take to heart:

The patient is the priority. Involving the patients, and the patient advocacy groups (PAGs) who represent them, is increasingly viewed as critical to all stages of the drug development process. Pharmaceutical and biotech companies need a true understanding of the patient experience. The most important thing for all stakeholders involved is to LISTEN, as the patient voice is often missing from medical literature.
Technology and social media play a role in patient advocacy. Through technology, the ecosystem has changed, altering the relationships among patients, healthcare providers and the companies that are developing medicines. Patients are gaining knowledge of their disease, and existing and potential treatments, and are sharing their experiences widely. Social media and connectivity will only continue to grow, providing patients with a powerful, global platform for advocacy.
Engagement is key. Engage early and engage often! An open dialogue is essential to bring down barriers between industry and patients. Industry must continue to learn how to speak with patients with confidence and transparency to truly understand the patients’ needs, and to help ensure access to treatments. Patient stories can, have and will continue to changes lives.
Understand the burden of disease. The heavy burden of disease that some patients experience can be misunderstood when viewed only through the lens of scientific data. PAGs play an essential role, helping to provide stakeholders with a more complete picture of the true burden of disease that many patients face and in helping to find real-life solutions. Technology has begun to help address issues for some patients. Moving forward, new quality of life measures need to be developed and used early on, whether through clinical trials or technology, to continue to improve patients’ lives and quality of care.
Work together. It is critical for the pharma/biotech industry to work with patients and to share information. Communication and collaboration must be a two-way street. There also needs to be increased partnership between manufacturers and PAGs on everything from clinical trial development to disease and treatment education efforts.