Why is the Patient Voice Critical to Drug Development? Hear from the Speakers of Our Patient Advocacy Summit

Sep 27, 2021

By Laura Rudberg, Director of Events, MassBio

To truly integrate the patient voice into all facets of the drug development life cycle, patient advocacy must come from the top-down. Ahead of MassBio’s Patient Advocacy Summit on October 1st, we asked our speakers how patient advocates both within companies and from the community can work to improve leadership buy-in and ensure the C-suite understands the significance of the patient experience. Here’s what they had to say:

“In our healthcare ecosystem, there is no more important voice than the patient voice. We as patient advocates are the “experts” of our story, and we must make our voices heard to those who have the ability to effectuate change. For those of us that serve in patient advocacy roles within companies, we are uniquely positioned to bring the patient voice to our leadership teams. It is imperative that we continue to build trusting relationships with patients so we can thoroughly understand and empathize with their experiences. These learnings help us embed the patient voice at the forefront of every internal conversation and decisions from the C-suite. For the patient advocates in the community, please continue to be unapologetically honest in your communication to anyone willing to listen.  Please never forget your voice is valued and truly instrumental in creating a higher level of understanding that will ultimately benefit fellow patients in our communities and our broader healthcare ecosystem.”

– Adam Taliaferro, Esq., Alliance Development, State Government Affairs, Bristol Myers Squibb

“I believe the patient voice is key to driving innovation. Because of this, a dedicated Patient Advocacy Team is crucial in integrating the patient perspective into the science and culture of a company. By partnering with and listening to the patient community from the very early stages of research, we can ensure that the science aligns with the company’s true purpose in helping address critical and unique patient needs. We act with urgency because patients can’t wait.”

– Rogerio Vivaldi, MD, MBA, President & CEO, Sigilon Therapeutics

“A strong, collaborative partnership between the Patient Advocates and the leadership team is critical in incorporating the patient perspective into the drug development process. Knowing the true experience(s) and/or thoughts of the patients, from their and their family’s perspective, is an important component in developing drugs that will not only meet their needs in the long term but will oftentimes create less burdensome clinical trials in which they will participate, thereby helping to increase the likelihood of people participating. Having the leadership working closer with patient advocates can help bring the voice of the patient into the forefront of our study development, which can only help us improve our designs and get effective therapies to the patients who need them.”

– Carrie Melvin, BSN, RN, MBA, SVP, Development Operations, X4 Pharmaceuticals

To learn more about how life sciences companies can more fully incorporate the patient voice into the work they do, register to attend our Patient Advocacy Summit.

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