#PatientsUseAI: We seek collaboration, not control

Continuing our climb: Breaking away from paternal protection

Editor’s note: Many people know that in my 2007 near-fatal kidney cancer, a patient community named ACOR helped save my life, as described in The BMJ, by providing invaluable information not found in journals. ACOR (“Assn of Cancer Online Resources”) was created back in 1995(!) by a visionary named Gilles Frydman. He’s unknown to most of the world, and I think that needs to change. Here’s his first post for this blog. — Dave

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We are living in a transformative moment in healthcare. AI’s potential to revolutionize diagnostics, treatments, and system efficiencies dominates headlines and academic journals. Yet, one critical voice remains underrepresented: patients.

AI tools like ChatGPT, Claude, and Perplexity are empowering millions of patients to tackle health challenges with newfound autonomy, agency, and creativity. These individuals are no longer passive recipients of care but active participants in their health journeys. Yet despite this grassroots revolution, academic discussions and policies rarely address how patients are using AI to take charge of their care.

When I read a recent article by a health policy expert on generative AI and patients, I felt encouraged by the attention to this important topic—but I also noticed a missed opportunity. Instead of highlighting how AI empowers patients, the conversation revolved around managing and overseeing their use of it. While safety and accuracy are critical, this framing doesn’t recognize the innovation patients are already driving.

Empowering Patients: A Proven Model

For decades, patients have demonstrated what’s possible with the right tools. In 1995, I founded ACOR, which grew to a network of over 200 online communities where cancer patients shared knowledge, support, and resources. These groups empowered hundreds of thousands to navigate illnesses and drive progress in research, clinical trials, and treatment access — often with remarkable improvements in outcomes.

What we learned then remains true today: empowered patients don’t just manage their health — sometimes they absolutlely transform it. Generative AI offers an unparalleled opportunity to amplify this empowerment. By breaking down barriers to information, delivering personalized insights, and enabling patients to advocate for themselves in a system that often sidelines them, these tools redefine self-care.

Now, as shown repeatedly on this blog, patients can access logical, actionable answers in seconds—capabilities once reliant on entire online communities.

Generative AI can ease the burden on an overstrained healthcare system, but to unlock its potential, we must shift the narrative. It’s not about controlling patients; it’s about embracing their agency and collaborating to shape the future of healthcare.

A Collaborative Vision for AI in Healthcare

Here’s how we can move forward:

1. Trust — and Develop — Patients’ Capabilities

Patients have demonstrated they can use AI responsibly and creatively. Let’s focus on education and resources to help them learn to maximize these tools.

2. Focus on Access and Equity

AI can reduce healthcare disparities, especially in underserved communities. To achieve this, we must ensure LLMs are trained on inclusive, accurate data and provide equitable access to user-friendly tools.

3. Foster Collaboration

Patients must have a seat at the table in shaping AI tools for healthcare. Their firsthand experiences are critical to developing solutions that truly meet their needs.

4. Embrace Transparency

Building trust requires clarity about how AI works, its limitations, and its risks. A standardized AI TrustLabel for tools like ChatGPT and Perplexity can empower patients to make informed decisions.

5. Celebrate Progress

From patients solving medical challenges to overcoming insurance hurdles, there’s much to celebrate—and even more to build upon.

Why Collaboration Matters

Healthcare works best when patients, providers, and innovators collaborate. Generative AI isn’t a tool to fear or control—it’s a tool to embrace as part of a shared mission to improve healthcare.

By shifting the focus from paternal oversight to partnership, we can unlock AI’s full potential to transform patient care. Patients need not be passive participants; AI is letting them become co-creators of a health system that works for everyone.

A Call to Action

This is a moment of profound opportunity. Let’s build a healthcare system that trusts and empowers patients, celebrates innovation, and embraces autonomy and collaboration.

Generative AI has the power to redefine healthcare — but only if we work together to harness its potential. If we get this right, we won’t just improve healthcare — we’ll reimagine it.

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This post is part of the #PatientsUseAI initiative to foster understanding and collaboration around generative AI in healthcare. Here’s a note from Gilles as a user of generative AI.

These thoughts are entirely my own; the text was crafted with the essential assistance of ChatGPT, showcasing the power of generative AI through iterative collaboration. By building on the context of our prior interactions, ChatGPT was able to help reflect my voice and ideas with clarity. This process highlights how AI, used thoughtfully, can enhance human expression and personalization.