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From the Information Movement to the AI Moment: 30 Years of Patient Empowerment

May 23, 2025

Then and Now: The Health Information Revolution

In May 1995, I co-authored Patients Online in Product Management Today, one of the first reports documenting a quiet early revolution—patients turning to the then-nascent “World Wide Web” for answers, community, and control. While health and innovation institutions viewed the internet with cautious curiosity, I saw a fundamental shift in the making. Patients, particularly those facing chronic or life-threatening conditions, weren’t just browsing; they were on a life-sustaining mission, and democratizing information was key to their survival.

I wrote then: “The most active users of online health content are not the ‘worried well’ but rather people with life-impacting illnesses seeking answers, community, and control.”

Read the original Patients Online article from 30 years ago here.

That insight is today’s SOP, but the tools have evolved. Back then, people braved dial-up modems and rudimentary search engines. Today, they engage in real-time dialogue with artificial intelligence. Technology has changed, but the purpose remains: Help me understand what’s happening to me. Help me find a path forward.

AI: The Next Chapter in Patient Empowerment

As we navigate the AI moment, the question is no longer whether patients seek information—they do, relentlessly. The question is whether AI can serve as a responsible, accurate, and ethical co-pilot in that search.

In the 1990s, access to information was the battleground. Today, it’s accuracy, personalization, and trust. Connectivity isn’t the obstacle in a 5G developed world. It’s sorting out accurate information from hallucinations.

Visionaries like Tom Lawry, former National Director for AI for Life Science at Microsoft Health and now a global consultant to health systems, echo this shift: “We are moving from population health to person-based care. That’s where AI thrives—in tailoring information to the individual at the right time and context.”

Thirty years ago, I witnessed patients demanding answers. Now, they demand relevance.

From Tool to Thought Partner

John Nosta, founder of NostaLab, captures what I believe is AI’s most profound promise:

“AI-centricity isn’t just about tools—it’s about thought. We’re entering an era where AI isn’t merely assisting our decisions, it’s shaping how we think about them. In healthcare, that means transforming AI from an instrument into a cognitive partner—one that helps patients navigate complexity with clarity, intelligence, and empathy.”

This isn’t about replacing clinicians or dehumanizing care. It’s about guiding people through complexity with clarity, requiring as much empathy as intelligence.

Trust is the Bridge

As John Whyte, MD, author and educator, former Chief Medical Officer at WebMD, and recently appointed CEO of the American Medical Association, reminds us, trust remains the cornerstone of health engagement: “Patients don’t need more data. They need direction. They need to know what matters and why.”

That’s the principle I shared in Patients Online. The most meaningful information isn’t just accurate, it’s digestible, relevant, and delivered with compassion. AI must earn trust to serve its greatest potential.

Health Equity in the Intelligence Era

One of AI’s most essential frontiers is its ability to close, rather than widen, the health information gap. Properly designed, it can demystify complex clinical terms, reach underserved populations, and support individuals with limited health literacy.

But equity doesn’t happen by accident. As Lawry warns: “AI can be the great equalizer — or the great divider. It depends on how we build, regulate, and deploy it.”

That same lesson applied to the early internet—and still applies today. Technology must always be developed through a human-centered, inclusive lens. Otherwise, progress will only reach the privileged few.

In the earliest days of the online health movement, seekers emerged not as a demographic but as a movement of humanity. They weren’t defined by age, race, income, or education. They were bound by need, searching for answers, empathy, and a sense of control. These were not chat rooms; they were lifelines. Strangers became companions on the most personal journeys in that sacred digital space.

The Quest Endures

In 1995, I said searching for health information was “often the greatest quest of someone’s life.”

That hasn’t changed. The need for community and connection—shared experience—remains central. What has changed is the scale and blink-like speed of the tools we offer to people on that journey.

We are now entering the second wave of the health information revolution. If the first wave gave us access, this wave must deliver accuracy, empathy, and personalization. AI is not the destination—it is a means to serve the age-old mission: to help patients be seen, heard, and helped.

Meet the Moment With Meaning

Thirty years ago, we stood at the dawn of the internet age and saw the patient emerge as a health information consumer. Today, we stand at the dawn of the intelligence age, and that desire for patients to have a voice in their journey is stronger than ever.

Looking back decades ago, I wrote, “Ultimately, the quest for knowledge versus mere information is what patient chats are all about.  We have come out on the other side of the information revolution, to the period of knowledge infusion. People know data is out there.  The only question remaining is: ‘How do I go about making it mine?’”

Behind every typed query or AI-generated answer is a person searching for clarity in a time of vulnerability. Our task remains the same: to meet them there—with science, heart, and unwavering respect.

Today, we marvel at the tools—but we must never forget the people. Behind each query is a soul in search of light. It’s our duty—as communicators, technologists, and caregivers—to meet them with science, yes—but also with soul.