About.

01 · What this is

What patientsuse.ai is

patientsuse.ai is the home of the #PatientsUseAI movement: the people who use artificial intelligence to understand their own health, and the organization built to serve them. It is a lean, startup nonprofit with one mission — to secure every patient's right to direct their own health with AI, agency for all, starting with those the system fails — pursued three ways: we educate patients to use AI well, advocate for their right to use it, and research how they actually do.

The name states a fact, not an aspiration. Patients already use AI — to decode lab results, prepare for appointments, search the literature, draft insurance appeals, track symptoms, and build software for conditions the market ignores. We take that fact seriously, observe it rigorously, and stand behind the people doing it. The patient holds the wheel; the machine assists. That order — patient-directed, AI-assisted — is the whole point.

02 · Where it comes from

Where it comes from

This movement did not start with AI. It is the latest chapter of a story that began when patients first found each other online.

In 1995, ACOR (the Association of Cancer Online Resources) connected hundreds of thousands of cancer patients and caregivers in mailing-list communities where expertise flowed sideways, patient to patient, faster and often deeper than anything available in the clinic. The lesson then is the one this organization is built on now: when patients gain the means to inform themselves and each other, they use it well, and the quality of their decisions rises.

The lesson repeated through every generation of tools — Smart Patients, the Society for Participatory Medicine, the e-patient movement. The DIY health movement went further: people with diabetes refused to wait for regulators and manufacturers. John Costik freed his young son's glucose data from a locked device; Lane Desborough and others turned that liberation into Nightscout, so any parent could watch a child's glucose from anywhere; Ben West decoded insulin-pump communications; and Dana Lewis, with Scott Leibrand, assembled it into OpenAPS, the first open-source artificial pancreas, given away free under the banner #WeAreNotWaiting. Individuals turned their own conditions into proof: Hugo Campos spent years fighting for the data from the defibrillator in his own chest; Sara Riggare did the arithmetic of chronic disease — one hour a year with her neurologist against 8,765 hours of self-care — and built her Parkinson's care around the hours that belong to the patient.

Change did not only come from patients pushing in. Some came from inside the institutions, from people who refused to let the system speak about patients without patients in the room. The clearest example is Lucien Engelen, who in 2010, after asking a hall full of digital-health leaders how many patients were present and watching not one hand go up, declared he would no longer speak at events that excluded them. That stand became the Patients Included movement and its charter, which set a plain standard for conferences and publishers: patients on the program, on the planning committee, and in the room, neither excluded nor used for their story alone. It was transformational precisely because it came from the institutional side, and it is part of the same story this organization continues.

Each time the technology changed, the institutional reflex stayed the same: warn, gatekeep, wait for evidence that the gatekeeping itself prevented from being gathered. And each time, patients moved first and were proven right to. AI is the largest capability shift in this lineage by far. This organization exists because, this time, the movement can do more than move first — it can document itself, build the science of what it is doing, and defend its right to do it.

03 · Who builds it

Who builds it

PatientsUseAI is a movement, not a person, and it is older than any of its tools. Its evidence is the work of hundreds of patients and caregivers publishing code in the open. Its frameworks come from across the patient community — critical AI health literacy from Hugo Campos and Liz Salmi, the DIY pioneers who proved patients build what they need, and many others, each credited where their work is used. The hashtag belongs to anyone who uses it.

Most of the day-to-day work, for now, is done by one person: Gilles Frydman, who founded ACOR in 1995, co-founded Smart Patients and the Society for Participatory Medicine, and coined the term "participatory medicine" — thirty years building the infrastructure patients use to inform themselves, now turned to the most powerful tool they have ever held, through Synambix LLC. That is the honest state of a young organization. It is also exactly what is meant to change: the work of this mission belongs in many more hands than one, and growing that circle — more contributors, more languages, more patients in the room — is part of what the organization is for.

04 · What you'll find here

What you'll find here

The Map, the science we are building — a topography of who uses AI for their health, how, and to what effect. Its first instruments: The Radar (radar.patientsuse.ai), a daily-rebuilt register of software patients build for themselves; The Casebook, every paper run through our instruments, assessed and on the record; The Daily Scan, tracking the field as it moves; and The Standard and its frameworks, the methodology behind it all. For patients who need help now, Start here gives ready-made guidance in English and Spanish, with the full Practice curriculum in preparation.

Related projects share this site's argument in other registers: the Museum of Paternalism (paternalism.org) documents the institutional habit of deciding for patients, and the AI Patients community (aipatients.org) practices critical AI health literacy together.

05 · Who this is for

Who this is for

Everyone who wants to understand their own health — and first, the people the system fails: those without coverage, without nearby care, without a clinician who has seen their disease, without a diagnosis anyone will explain, without the money to ask a question. If the system has no answer for you, this site insists you still have the right to seek one, and the right to the best tools for seeking it.

06 · Contact

Contact

Write to hello@patientsuse.ai. Share what you build and learn under #PatientsUseAI. If you are a patient developer whose work belongs in the Radar, tell us.