Halle Tecco’s new list of 65 women in healthcare AI you should follow began with a photo. Roxana Daneshjou sent her a picture of a healthcare AI panel with no women on it. Tecco, who founded Rock Health and teaches at Columbia Business School, asked LinkedIn who actually leads health AI, and hundreds of names came back. She cut them to 65 founders, investors, researchers, journalists and advocates who are, in her words, “building the tools, setting the guardrails, funding the companies, and asking the questions.”
One of those 65 is our board member Christine Von Raesfeld, co-author of the Patient AI Rights Initiative and a person living with multiple rare and chronic conditions. As far as we can tell, she is the only patient advocate on it.
Tecco’s case for the list is pretty darn clear. Women make most household medical decisions, spend years being dismissed and misdiagnosed, and until 1993 were not required to be included in US clinical research at all. AI trained on that record inherits it unless the people writing the rules change.
Most women on this list decide what health AI gets built and who pays for it. Christine’s job among them is to speak for the people the tools get used on, and she has spent years making sure that voice arrives with a vote.
You know who else gets left out?
Patients! And we’re celebrating that Christine’s important and tireless work has been celebrated on this list of amazing women. In early 2024, while health systems and tech companies were busy publishing their own AI principles, The Light Collective convened patient activists, clinicians and data experts to write a set of rights from the other side of the exam table. Christine was one of its authors. Collective AI Rights for Patients went out for public comment in April 2024, and version 2.0 followed that June.
The Patient AI Rights Initiative was the first and only project of it’s kind as AI began getting adopted in healthcare. And the requirements in this framework were clear: Patient community representatives sit on AI governance bodies as voting members. Anyone whose care was affected by a biased or faulty model gets told. Audits and certification of health AI stay independent of the companies and institutions that profit from the product. When AI fails someone, that person has a right of action, a real path to being made whole. We carried those rights into the National Academy of Medicine’s AI Code of Conduct initiative, so a patient-written document landed inside a national process.
Christine wrote at the time about the weight the cohort felt dissecting algorithms on behalf of their communities. She has carried it since into the NIH All of Us Research Program, the NIH HEAL Initiative, and advisory work with the Global Alliance for Genomics and Health and BeginNGS. She also brings her own genome to the table. Through Stanford’s Humanwide initiative and the Research to the People program she shares her genomic and multi-omic data, then asks what rights come attached to it.
Read the full document on the Patient AI Rights Initiative page.
AI Rights Advocacy
On May 28, 2025, the California Assembly’s Health and Privacy & Consumer Protection committees held a joint hearing on generative AI in health care, the kind of AI that drafts clinic notes and patient messages. Assemblymembers Mia Bonta and Rebecca Bauer-Kahan chaired. Kaiser Permanente described its generative AI rollout as the largest clinical deployment in the country. Physicians and vendors had the California Medical Association and the Coalition for Health AI at the table. Stanford’s Michelle Mello told lawmakers that most health care organizations do very little to vet the AI they buy and even less to monitor it.
Christine testified on the hearing’s final panel as Lived Experience Expert and Board Member of The Light Collective, the one witness whose expertise came from being on the receiving end of those systems. Lawmakers hear from hospitals, vendors and professional associations at every AI hearing. A patient who can also explain data governance is rare in that room.
Sacramento invited her back. On August 4, 2026, the Select Committee on Biotechnology & Medical Technology and the Privacy committee convened AI in the Life Sciences: From Research and Development to Patient Care. Christine sat on that panel beside UCSF’s Ida Sim, Parker Institute CEO Karen Knudsen, Stanford bioethicist David Magnus, and executives from Dexcom, Lilly Ventures, Twist Bioscience and Lawrence Livermore National Laboratory. When California decides how AI reaches patients, she is in the room making sure “patient” refers to someone who gets to speak.
“My Data Is My Song”
When 23andMe filed for bankruptcy on March 23, 2025, genetic data from roughly 15 million people went on the auction block as a company asset, less than two years after a breach exposed nearly 7 million of them. Around 2 million customers deleted their accounts. A bipartisan coalition of 28 states objected to the sale. Regeneron bid $256 million. A nonprofit led by 23andMe’s own founder outbid it at $305 million, and in June 2025 the bankruptcy judge approved the sale, writing that selling genetic data is a scary proposition that lawmakers had never banned.
California objected under its Genetic Information Privacy Act, which requires separate, explicit consent before genetic data or samples change hands. Two courts denied the objection. This week the state settled for $6 million and dropped its appeal. Bankruptcy law treated 15 million genomes as inventory, and it held.
While attorneys general fought in court, Christine took the argument to the public. In June 2025 she joined bioethicist Linda MacDonald Glenn and federal policy expert Wes McClelland for “23andMe BioBankruptcy: Is it a data heist?”, a live discussion on who owns our DNA once a company goes under. Her framing stuck: “If your data is your song, shouldn’t you have rights in it?” Songwriters get royalties and a say in who performs their work. People whose genomes were sold got a court docket.
She has made that argument since at least 2023, long before the bankruptcy made it urgent, and it runs straight through the Patient AI Rights Initiative. Data about you should carry rights that travel with it, through a sale or a bankruptcy, and someone should answer when they don’t.
Christine’s Leadership At The Light Collective
Christine sits on The Light Collective’s Board of Trustees and acts as our community liaison, so she is both a person governing the organization and the person who hears first when a patient community gets burned. She founded People With Empathy, was an e-patient scholar with Stanford Medicine X, and has sat on technical expert panels for CMS. Silicon Valley Business Journal named her one of its Top 100 Women of Influence, and HIMSS put her in its Future50 class of 2021.
Her writing does the same work her testimony does. Her Substack, Enduring Advocacy, opened October with “Blind Trust,” an account of being told she needed an implanted cardiac device to survive, then receiving pages of warnings about magnets and store security gates and nothing about the wireless connection keeping her alive. Earlier this year she co-authored an editorial in the Journal of Participatory Medicine with Amy Price, Real-World Data Needs Real-World Doctors, on what happens when automation moves faster than the clinicians using it.
Follow Christine, then follow her lead
Congratulations, Christine! We love you and thank you for you incredible tireless work. Being named alongside the people building and funding health AI truly a win for all patients, and a win for every patient community that has been told to wait outside while decisions get made.
Want to follow her lead? Here’s what you can do:
- Follow Christine on LinkedIn and subscribe to Enduring Advocacy.
- Read the full list of 65 and follow the women on it. Tecco’s point holds: AI will close gaps in women’s health only if women are in the room where it gets built.
- Read the Patient AI Rights Initiative and share it with your patient community.
- When the next list gets crowdsourced, nominate a patient advocate. Make sure the next thread includes people the tools get used on.
If you run a health system, a company, or a legislative hearing, put a patient on the panel with a vote and pay them for their time. Christine has shown what that looks like. Panels without patients end the day you decide they do.
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