I recently posted an article entitled, “In Cancer, Patient-Empowering AI Begins to Change Care, Relationships,” that contained this declaration, “Good medicine needs to become participatory medicine, not least because involving the patient as a partner consistently improves care.”
That statement was true when the Society for Participatory Medicine (SPM) was formed in 2009. Now, however, it’s true in a very different way.
The Internet transformed information from being “designed for consumption” to “designed for participation,” Susannah Fox, put it in her work for the Pew Internet Project. Today, the advent of sophisticated algorithms that are part of larger platforms is radically widening the boundaries of participation. Artificial intelligence is giving patients the ability to find, create and act upon an unprecedented breadth and depth of authoritative information. The old hierarchies are crumbling; partnership is poised to take its place.
SPM has the opportunity and obligation to help lead this revolution. Allow me to suggest that my article, posted on my Forbes page, contains some lessons on how SPM might better make its voice heard.
To begin with, the idea that patients might be empowered by AI does not seem to have penetrated to any of the medical prognosticators who have seen AI as, at best, an educational tool and, at worst, another way patients might be misled. Of course, the visionary physicians associated with SPM know better. My article was written from the patient viewpoint, but op-eds by doctors or by SPM doctor-patient pairs asserting the “better partnership” possibilities of AI could, in the right venues, have a powerful impact.
Secondly, the article is anchored in the medical literature. This is an area where I believe SPM needs to increase its attention both to what’s being published and to the potential allies doing the publishing. For instance, a 2022 article in the Journal of Oncology Practice focuses on expert “e-patients” and their rise “from backseat passenger to co-navigator” in cancer. While some SPM members are no doubt familiar with the authors and the Collaboration for Outcomes Using Social Media in Oncology, SPM as an organization should be an integral part of these efforts.
Finally, stories thrive on specifics. I give examples of companies doing patient-centered AI. SPM’s strength is both in its members’ knowledge of the field and their own stories. While the passion, commitment and savvy of many individual members is well-known, the organization is not. The use of videos with focused stories and the Creative Learning Events laid out in the most recent SPM Executive Director report to members are a promising start to remedying that weakness.
The “democratization” of data, for which so many SPM members have fought so fiercely for so long, is finally arriving. As we’ve seen from political democratization movements, however, initial success doesn’t guarantee that “power to the people” will persist. The increasing corporatization of American medicine is a warning sign that old hierarchies can easily be replaced by new ones.
In an AI world, SPM’s vision and leadership for health partnership are more vital than ever. It’s imperative to capture the attention of the public and policymakers – not just those in the field – with compelling stories highlighting the organization’s vision of what this new era can and should be.
Michael L. Millenson is an internationally recognized expert on making health care better, safer and more patient-centered. The author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, Michael is president of Health Quality Advisors LLC and an adjunct associate professor of medicine at Northwestern University’s Feinberg School of Medicine. Michael currently serves on the boards of Project Patient Care and the Optimal Cancer Care Alliance. He is an advisor to the Lundberg Institute and an information technology start-up.
You can experience for yourself SPM’s first Creative Learning Exchange for 2023, Advancing Health Equity Through Participatory Medicine. Buy virtual or in-person tickets here: https://www.eventbrite.com/e/advancing-health-equity-through-participatory-medicine-tickets-594076888967?aff=ebdssbdestsearch. Thanks!