“I know you think your organization is patient-centered … but it really isn’t.”
The statement from a rare disease foundation president to a room full of industry partners stung as we observed a candid but cordial exchange about what “patient-centered” has come to mean in today’s health industry world. Everyone knew what they were hearing was right.
Rewind a few days to the CBI Independent Medical Education and Grants Breakthrough Summit, where we were excited to share insights on patient education on one of their panels: The Multifaceted Value of Partnering with Patient Advocacy Groups in CME. It’s a topic that’s being discussed more frequently now, with research supporting what we’ve known for years — integrating the patient voice into education (whether you’re educating patients or clinicians) is a must.
Nancy Paynter’s keynote led into a day of discussions exploring how independent medical education companies can and must work to improve the dialogue and understanding between clinicians and patients by reminding us of how far we’ve come as a community to get CME/CE departments in hospitals out of “the basement” and into the strategic line of sight of health care organizations. We found ourselves agreeing with the other innovative companies focused on bringing CME to the fore of such key initiatives in healthcare as MACRA and MIPS providing a key lubricant to the gears that turn the Triple Aim, and, most importantly, directly impacting patient outcomes through patient-inclusive educational design.
I was recently honored to join a distinguished panel of CME thought leaders representing the industry, patient foundations, and independent education company perspectives to discuss how partnering with patient advocacy organizations can elevate CME/CE programs. Patient advocacy groups and foundations don’t just bring patient stories which, admittedly, are great for building empathy. They bring experience, they bring science, and they can provide great depth of advice on key issues that drive patient outcomes, like addressing care coordination challenges in complex disease states. What they need from us is the technical capacity to help incorporate their voice into sophisticated medical education on topics most relevant to their members and the clinicians that treat them, and our commitment to outcomes measurement that they can proudly report back to their communities and supporters.
Two days and 3,000 miles later, we landed at the Global Genes Rare Disease Patient Advocacy Summit, where these points were proven with a world-class showcase of where and how the patient voice is king (or should we say “queen?”). In its sixth year, the Summit has set the pace of the rapid evolution of patient advocacy and its increasingly central role in translational research, drug development, trial recruitment and even commercialization. Foundation leaders packed lectures halls for updates on cutting-edge research, drug development and more sophisticated advocacy tactics and strategies to support RARE patients and caregivers.
This year’s conference also drew attendees from industry and investor groups intrigued by the growing accomplishments of RARE foundations driving new therapies and research methodologies. More to the point is the evolving mission of disease advocacy that the Summit embodied in its attendees: a rich contribution to healthcare and medicine through the maturation of disease advocacy — from the beginnings of an on-a-mission parent of a newly diagnosed child to the mother-turned scientist/entrepreneur.
The clearest depiction of this was the outcome of the Battle of the Brains competition, part of the summit’s first ever Rare Partnering and Investor Forum. The research presented in the final round included participants from Harvard MGH, Cincinnati Children’s and other renowned research institutions, as well as Debra Miller, who started her journey to and with CureDuchenne as a mother of a child affected by this rare disease. The series of presentations was astounding — all showing promising reports with ambitious timelines and goals. All were built directly around and incorporating the patient from the beginning (and in the case of [presenter’s] presentation, around one patient with the goal of expanding the successful outcome to a wider population). When it was all said and done, Debra Miller and CureDuchenne initiative came out on top and was declared the winner of the first annual Battle of the Brains competition as she demonstrated how the drug increased Dystrophin in mice following systemic delivery of AAV-Cas9, a drug being developed by the pharmaceutical company her foundation helped found.
There is no person with the patient in the center of their mind more than a mother on a mission who decides the fundraising for the foundation she started will go toward building a startup biotech focused on curing a disease. The patient is always number one. We left both the CBI and Global Genes summits excited and challenged around the future of education. We in the medical education space must move faster. We must become more integrated into the core areas of medicine that are driving progress to match the accelerating sophistication and expectations of the rest of health care.
Education for patients must support, empower and activate them to improve their or their loved one’s health and demand more of the healthcare system meant to serve them. Education for clinicians must be elevated to include the data-driven clinical information and the patient voice, lest we forget that it’s the patient sitting in the exam room waiting to be seen. As providers of clinician education, whether accredited or unaccredited, we cannot let clinicians fall behind because of our own inability to innovate at a higher rate.
The challenge to be truly patient-centric is still ringing in our ears. It’s events like the these, and the people at them, that remind us why our commitment to providing education that connects the education community to the advocacy and clinician communities and to deliver measurable outcomes is so important. In a system where so much is stacked against the clinician and patient, the education we provide to the most invested parties must rise above the noise and be truly patient-centered.
So, as an education community, the question remains: who is content to go through the motions? And who among us will consistently and measurably support better value, health outcomes and care experiences through education?
Christian Rubio is vice-president of marketing, PlatformQ Health.
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