Part One: Insights Into The DIA’s Patient Advocacy Program
At this year’s Annual Meeting of the Drug Information Association (DIA), my colleague Jackie and I had the pleasure of meeting with representatives from the DIA Patient Advocate Fellowship Program. The program was designed to strengthen patient collaborations with industry players and to raise awareness of patient groups. Now in its third year, the program has successfully “graduated” more than fifty Patient Fellows. Needless to say, Jackie and I felt compelled to reach out to the DIA for a special blog interview to learn more. Here’s what they had to say…
We’re so excited to have the opportunity to learn more about the DIA Patient Advocate Fellowship Program. Could you tell us more about the program?
Patient organizations are key players in DIA’s mission to foster innovation to improve health and well-being worldwide. DIA is working to ensure that the voice of the patient is heard globally in every facet of the discovery, development, and life cycle management of pharmaceuticals, biotechnology, medical devices, and related products.
Through DIA’s worldwide conferences and programs, patient representatives have opportunities to develop, strengthen, and support collaborations with industry, government, regulatory agencies, academia, and the scientific community. The DIA Patient Advocate Fellowship Program provides the tools needed to ensure that participants learn how to raise awareness among DIA’s multi-stakeholders that opens the door to a two-way dialogue across the entire global healthcare community. Advocates also learn how to improve their capacity to disseminate reliable, objective, comprehensive, and understandable information to their constituents, and highlight the importance of active involvement of “patient experts” in the drug development process.
The inaugural launch of the Patient Advocate Fellowship Program took place at the 2011 DIA Annual Meeting in Chicago, Ill. Fifteen Patient Advocates, who were chosen through a competitive process, attended the Annual Meeting to learn about medical product research and development, including where in the process their input may be practical and valuable. They took part in all facets of the event, including speaking on panels, attending sessions and town hall meetings, roundtable discussions, and networking events. Now in its third year, the program has successfully “graduated” more than fifty Patient Fellows.
It’s clear that all of the fellows have a special story. Would you mind sharing one that has been particularly powerful this year?
Without question, every Patient Advocate has a poignant and riveting story about what propelled him or her into the world of patient advocacy. To bring home this point, this year’s Annual Meeting attendees had the opportunity to see a spellbinding documentary called Rare. Produced by Stanford University, this film introduced viewers to the “behind-the-scenes” challenges and triumphs of living with a rare disease. Audience members laughed and cried then had the opportunity to meet the stars of the movie − Donna and Ashley Appell, a vibrant mother-daughter team who are on a mission to find a treatment and cure for Hermansky-Pudlak Syndrome. Donna is a passionate and seasoned Patient Advocate while Ashley bowled everyone over with her wisdom and charm. To witness first-hand their combined energy, enthusiasm, optimism, and wonderful sense of humor and hope in the face of incredibly daunting odds was transformative not only for me but for every person who crossed their path.
In what ways do the unique perspectives of the fellows enhance this year’s conference?
The DIA Patient Fellows ‘Class of 2013’ hailed from almost every major therapeutic area while representing patients from across the disease spectrum including those with diseases that affect large populations, rare diseases, diseases where there are treatments available, and diseases for which no treatment in known. Each Patient Fellow brought an “in-the-trenches” as well as “macro” perspective about what needs to be done to ensure that thevoice of the patient is heard globally.
The Patient Fellows, some of whom are patients themselves, worked tirelessly to incorporate a patient-centric perspective as they presented sessions, spoke on panels, conducted media interviews, answered questions and exchanged ideas at the Patient Advocate Fellowship Program booth, and participated in virtually every aspect of the meeting. Through the Fellowship Program, participants were provided opportunities to create synergies across public and private partners, promote dialogue, and facilitate meaningful and significant change – change that has resulted in life changing and life saving healthcare innovation. What’s more, these strategies can be easily replicated for other patient-centered organizations where every individual can learn to “advocate” on behalf of the universal patient community.
Click here for part two of this series where we'll learn more about the DIA Patient Advocate Fellowship Program!