James Cummings

"James P. Cummings is the founder of Participatory Health, a 501(c)(3) nonprofit built on a conviction born of necessity: that patients and caregivers — not hospitals, insurers, or apps — are the true custodians of the complete, longitudinal health record, and that the tools finally exist to put that record in their hands.

A digital product and UX designer by training, James founded Participatory Health after his two young sons were born with unrelated rare diseases. Navigating fragmented care across some of the nation's leading institutions, he saw firsthand how the data that should drive a child's diagnosis and treatment sits scattered, siloed, and largely inaccessible — even to the families who need it most. Rather than accept those gaps, he set out to close them.

James's core argument is deceptively simple. Patients and caregivers may lack formal medical training, but they hold two assets no clinician can match: fully aligned intentions and abundant time. As genomic, wearable, behavioral, and environmental data increasingly outpace traditional clinical records, consumers become the only parties positioned to assemble a real-time, complete health record — and, paired with AI, to make it actionable. He builds toward a future where health data travels securely with the individual, and where families, clinicians, and researchers collaborate on a shared, patient-controlled foundation.

He works at the technical frontier of that vision. James is an active contributor to the HL7 FHIR community and its accelerator programs — CodeX, Vulcan, and Da Vinci — a participant in the CMS Health Technology Ecosystem initiative, and a hands-on practitioner of SMART on FHIR and SMART Health Links, collaborating with the standards' original architects. He is currently leading a pilot with the Diamond Blackfan Anemia community that lets families aggregate their children's longitudinal records and contribute them to research — a model deliberately designed so disease foundations, not commercial data brokers, own and steward their communities' data. He begins in the rare and undiagnosed disease space precisely because those communities are already the most advanced participatory patients and caregivers.

James is the author of the peer-reviewed viewpoint "Consumer Data is Key to Artificial Intelligence Value: Welcome to the Health Care Future," published in the Journal of Participatory Medicine (2025), and served as Principal Investigator on a National Institutes of Health R01 application advancing patient-mediated data aggregation for rare-disease research.

A compelling and increasingly sought-after voice, James has presented at HL7 FHIR DevDays 2026 — co-delivering "Kill the Clipboard" alongside SMART on FHIR creator Josh Mandel and patient-advocacy pioneer "e-Patient Dave" deBronkart — as well as the WEDI Winter Forum, AMIA Amplify 2026, and Harvard/DCI Network's Patient-Powered Digital Health 2026. His work has been featured within the #PatientsUseAI movement as a model of what empowered, data-driven caregiving can achieve.

Driving all of it is a purpose he describes as a duty: to help patients help their doctors, and to build the infrastructure that finally places people at the center of their own health data — where they have always belonged."