How can we support patients from all angles? Hear from the Speakers of MassBio’s upcoming Patient Advocacy Summit

Sep 01, 2022

By Laura Rudberg, Vice President of Membership and Events, MassBio

As we explore the theme of MassBio’s Patient Advocacy Summit on September 15th, Supporting Patients from All Angles, we asked our speakers about how the life sciences can best continue to advocate for patients, and support patients from all angles:

Rich Pezzillo, Executive Director, New England Hemophilia Association, said:

“The voice and needs of the patient are essential in every aspect of health care. As research continues to advance better treatments and therapies for those living with a chronic condition, it is vital for patients, health care providers, elected officials, and the life sciences industry to develop a strong partnership. Listening to the needs of all stakeholders is key to shaping what the future of health care looks like.”

Peggy Ellertsen, Member, Strategic Team, Communication Access in Health Care Program, Hearing Loss Association, said

“In order to really hear and understand the patient’s voice, the community of life scientists can invest in one of the most important aspects of patient advocacy:  intentional building of relationships with those within their patient groups in contexts beyond the work of research.  Engagement with patient groups through involvement with patient advocacy organizations forges the path toward deep appreciation of the impact of disabling conditions on the full range of patient experiences.  The development of such connections also enables professionals to build relationships by joining with patient groups in support of their work toward effective self-advocacy, in particular, in the shaping of public policy.”

Gretchen Hover, Founder and Managing Partner, Imbue Partners, said:

“At its core, redefining how we engage patients and bring their voice into the R&D and post-launch process requires drug manufacturers to change their organizational mindset — to one that more fully embraces an appreciation for patients’ lived experiences, sustains a sense of urgency to deliver more than medicine, and fosters a fundamental curiosity to deeply understand the whole patient, their whole journey. This requires us to ask new kinds of questions and to seek novel ways to answer traditional questions. One approach I use is Appreciative Inquiry (AI), the practice of inquiry-driven change. It can turn an ordinary, PowerPoint-focused AdBoard into an energized, meaningful collaboration.”

Representative Hannah Kane (Shrewsbury):

“Fostering relationships within the established life sciences and healthcare systems, as well as with key advocacy organizations on the outside, is crucial to effective patient advocacy. All parties must establish and embrace formal and informal communication methods and the open sharing of ideas, especially from the patient. Truly supporting patients means listening to and learning from their advocacy, as the entire ecosystem benefits. The outcomes – advancements in life sciences, more efficient and effective diagnosis and treatment in healthcare settings, and most importantly improved outcomes for patients, should motivate all of us to listen closely to patients. And I include those working in government in the long list of those who benefit from and can help improve outcomes for the ecosystem by truly listening to patients.”

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