At this year’s American Academy of Neurology (AAN) Annual Meeting in Chicago, a small group met within the famed Francesca's on Chestnut. It’s an elegant establishment, with moody lighting set against wooden beams and brick alcoves. But our humble group of twenty set to work even before making our menu selections such was the urgency and importance of our gathering.
We planned this dinner to explore whether this is the right time to align around data standards and improve data exchange to better support care coordination, research, and population health. Those of us who sat around the table that night had an acute interest in data exchange regarding movement disorders, with a particular emphasis on Parkinson’s disease.
Though our number was small, we represented a broad cross-section of the care ecosystem, including clinicians, informatics experts, patients, caregivers, scientists, the Parkinson’s Foundation, and a vendor of patient monitoring services.
I represented one of two informatics subject matter experts invited to share perspectives on current data and interoperability standards and the processes needed to enable more effective exchange.
Early in the dinner, it became clear that we shared a strong alignment as well as a galvanizing enthusiasm to move this work forward. Many agreed that the field is ready to take meaningful steps toward reducing fragmentation and establishing more consistent approaches to data sharing.
In addition to the professional pedigrees sitting around that table, the organizers themselves, faculty at Northwestern University Feinberg School of Medicine, led the meeting and sparked meaningful discussion.
One promising next step under consideration is the formation of a formal FHIR accelerator within HL7, likely starting with Parkinson’s disease and expanding over time to include other neurological conditions.
We all left the meeting with the expectation that this group will continue to build momentum and grow. I was not alone in expressing eagerness to stay engaged as the work progresses. Our outcomes are directly related to significantly improving both patient care and research efforts through shared data standards in neurology.
And if you find yourself in Chicago and seated at Francesca's on Chestnut, I highly recommend the tiramisu. Like our meeting that night, it was truly memorable.