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Episode description
For Anna McCollister, health data access has never been abstract. Living with type 1 diabetes has meant fighting for years to get her own health information from her devices, labs and doctors. She turned that frustration into a career—helping launch #WeAreNotWaiting, advising companies on how to earn patient trust and shaping national interoperability policy through HITAC and The Sequoia Project. Listen in as she explains why most barriers to patient data aren't technically hard to solve—they've simply gone unaddressed—and what changes when patients stop waiting and take action.
In this episode:
0:00 – Intro: what becomes possible when the patient isn’t along for the ride, but at the wheel
2:00 – Anna’s path: from journalism and foreign policy to health IT, and the realization that her own frustrations as a patient were fixable—it was just that nobody had bothered to fix them
4:00 – A continuous glucose monitor whose software only ran on Windows: buying Parallels to see her own numbers
6:00 – “It’s my data. This is my health.” Discussing lab values she could never get
8:00 – How #WeAreNotWaiting started: patients and parents who happened to write software, and two devices locked shut
9:00 – A receiver, an Android phone and a Pebble watch: John Costick’s hack meant parents could monitor their child’s glucose levels
10:00 – Ben West cracks the insulin pump protocol, and Anna takes the case for open APIs to the DiabetesMine stage with the FDA in the room
11:00 – Loop: a closed-loop artificial pancreas built by patients, free on GitHub, more than 30,000 users worldwide
12:00 – Where the gaps still are: patient portals were a real win, and they’re nowhere near enough
13:00 – Four days to eye surgery, 30 days to the imaging: mail a paper check, wait for it to clear, then wait a month
15:00 – Designing with patients, not for them: inside a genetic testing company built on “patients own and control their data”
16:00 – The trust stack: don’t try to avoid losing trust, try to earn it
17:00 – The annual report that changed minds—publishing every way patient data was used, and watching skeptics become supporters
18:00 – Why electronic health information is a harder fight than devices, and why nothing moves without a sense of urgency
19:00 – The Sequoia Project’s ask of hospitals: rethink data access as user experience, not systemic overhaul
20:00 – Two ideas that need to go: portals are sufficient, and patients don’t want their data
21:00 – Four different LLMs, one mysterious diagnosis: analysis beyond what her physician had capacity to provide
22:00 – The unfinished piece: why personal health records and mobile apps still can’t get a reliable data feed
23:00 – 19 doctors, 170 appointments in a year, and a stack of manual downloads before every one
24:00 – Anna’s better way: put health data on the phone—it’s slowing progress, and it's very fixable
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