The Patient AI Rights Initiative
Seven collective rights for patients in the age of health AI, co-authored by 11 advocates across the network with support from the Gordon and Betty Moore Foundation.
A Roadmap to Rights
Who represents patients when we build technology?
Our mission is to establish lived experience and patient intelligence in the technologies, policies, and innovations that will impact millions of people worldwide.
The Roadmap to Rights
Six programs. One strategy for patient power.
Each program helps communities organize, align priorities, and lead the conversations that shape the tools they rely on.
01
AI Rights for Patients
The PAIR framework — seven collective rights for patients in the age of health AI.
Learn more → 02Community Research
Patient-led, IRB-approved studies that turn lived experience into evidence.
Learn more → 03Social Media Group Practices
Standards and tools for safer, patient-governed online health communities.
Learn more → 04Patient Cyber Hygiene
Practical guidance to protect communities and their data from harm.
Learn more → 05Don’t Get Hacked Bootcamp
Hands-on training that gives advocates the security skills to defend their work.
Start the bootcamp → 06Resource Library
Open guides, templates, and tools for patient advocacy organizations.
Browse the library →By the numbers
The Light Collective’s Impact.
11
advocates co-authored the patient AI rights framework
377
patients in our IRB-approved AI disclosure study
37
patient-led organizations in our coalition
90
patient community leaders and innovators trained in digital advocacy
What already exists
When the question is “what have you actually built?” — this is the answer. All of it is published, peer-reviewed, or seated where decisions get made.
Tangled in the Web
A community-led, Johns Hopkins IRB-approved study of 377 patients. The finding: 91% want to be told when AI is involved in their care. Published and peer-reviewed.
A voice where decisions are made
Contributors to the NAM AI Code of Conduct, with governance seats at the Health AI Partnership and CancerX, plus policy engagement with the FDA and the California State Assembly.
Let’s keep talking
Let’s build tech patients can actually trust.
Whether you fund infrastructure, shape policy, or build the tools — patient governance is the missing layer, and it’s the layer we’ve built. Tell us what you’re working on.