Why I’m not attending the June 3 meeting

I was invited to attend a policy discussion at the White House complex tomorrow, June 3, 2025. The subject is important to me – access to our health data, plus some items about publishing data about quality of healthcare and about patient safety. These are things I’ve advocated on for years.

But I decided I can’t stomach the idea of attending, and I want to say why, plus say what I would say if I were there. The video is 12 minutes long. More notes below.

People the policy team should listen to, in my absence

• People like James Cummings and Hugo Campos—patients—are already proving that they want to take responsibility for their health if we’ll give them the tools. Here’s Hugo’s post describing how his future AI tools will access his complete medical record, and James Cummings’ completely different post about how he too needs a complete longitudinal record to use AI to help his two kids – each has a different rare genetic problem.
• Listen to Grace Cordovano, an extraordinary and competent advocate who works with real families with real sickness and real problems getting at their data. 
• Listen to Anna McCollister, member of Health IT Advisory Committee (HITAC), board member of the Sequoia Project and head of its Consumer Engagement interoperability workgroup. Living with Type 1 diabetes and many complications, she has vivid lived experience with the importance of the subject (Healthcare IT News) and years of policy experience.
• Listen to the extraordinary Regina Holliday (short video), the widow of filmmaker Fred, whose final months with kidney cancer were made much worse by the lack of his medical records – and the heartless attitude about it that their hospitals displayed. She was a key voice ten years ago for the policies that today give you access to your data in portals such as MyChart. She will be present at this event, painting what she hears in the room, as always. She is today an ordained minister. See also her comment below, from Facebook.
• Listen to Microsoft’s Josh Mandel, an MD himself who’s blogged openly about what happened when he tried to get ALL his data. (Spoiler: what he got was a giant pile of undocumented bits and bytes. But he’s been posting on LinkedIn his super detailed comments on every part of this RFI, and I endorse it.)
• Listen to Jen Goldsack of the Digital Medicine Society, a cancer patient herself, who’s working with many companies trying to get data through modern APIs. (She’s quoted extensively in this article.)

Some quick notes on background

This quote is inscribed on the giant wall in the lobby of the Hubert Humphrey Building, home of HHS, in Washington. I’m trying to dig out a photo I took of it on a visit years ago but for now this will do.

I’d say it’s not just the moral test of government, it’s the moral test of a society. In a weak society or a heartless society everyone’s on their own. In a truly great society the weak are supported. And indeed, Humphrey said this during the 1960s dawn of what came to be called the Great Society movement.

• The “RFI” is this Request for Information published May 16, asking for public input on proposed policies. It’s summarized very well in this excellent article last week.
• [More links to come] Cutbacks on diabetes programs, smoking cessation, DWI assessment
• Cancellation of funding for new drug development – including cancer treatments that were already in development! Imagine having that disease and being told this news.
• Some information about how a surgical error during cataract surgery gave me glaucoma
• Russell Vought’s daughter with CF, including wife Mary’s grateful post about American healthcare developments (which their Project 2025 is slashing)
• The horrific, unethical conduct of the long term care chain that hastened my mother’s death. (See also the comments from many others)
• “Competent white men must be in charge” – Darren Beattie. (Note: they haven’t scrubbed his social media – they’re leaving this right out there for all to see.)
• My post about Morgan Gleason’s 23 patient portals. (Her mother Amy Gleason is supposedly the administrator of DOGE, though nobody I know believes that; it was announced without her knowledge while she was on vacation! But she most definitely works in health data at CMS.)
• My daughter’s award from the National Association of Biology Teachers.
• Hitler was embarrassed at the 1936 Berlin Olympics by Jesse Owens winning four golds, which rather spoiled Hitler’s ignorant fantasy that only Whites could be superior.