It’s good to be not dead. Let me start with that.

It’s been 19 years since my oncologist said those beautiful words: “Looks like you beat it.” This was great news, considering that six months earlier, I wasn’t supposed to survive another 24 weeks.

Today I travel the world speaking at healthcare conferences—close to 800 events in 26 countries. But back in 2007, I was just a high-tech marketing guy who liked doing unnatural acts with Excel. My life changed with a single phone call.

The call that changed everything

In early 2007, right around New Year’s, I went in for a routine physical with a stiff shoulder. The doctor sent me for a shoulder x-ray and called me the next business day.

If you’ve ever had a call like this, you will understand. I have total multi-sensory recall of this moment. I remember the blue-carpet partition in front of me. I know what the Sony desk phone looked like. I can see the time digits on the digital clock: 09:00.

My doctor said, “Dave, your shoulder’s going to be fine. But there’s something in your lung that shouldn’t be there.”

Totally by coincidence, the x-ray had picked up a tumor in my lung that turned out to be renal cell carcinoma, which had metastasized from my kidney. And because I’ve always been an overachiever, I didn’t have just one tumor. I had five in the lungs, one in my brain, one in my ulna, and one in my femur that eventually caused a fracture. Just before treatment started in April, a tumor erupted in my mouth.

I asked about my prognosis. The oncologist correctly said there was no good data for people like me—advanced cases like mine, especially in my age range, hadn’t been studied much. But I’m the kind of person who just wants to know. So I kept looking. I eventually found one small study that said for people at my functional status, median survival was 24 weeks.

Finding the good stuff on the internet

After the shock of diagnosis, my wife and I were left with the big questions: What were our options? What could we do?

Here’s where my story takes a pivotal turn. My primary physician, Danny Sands, didn’t tell me to stay off the internet. Instead, he showed me how to find the good stuff. Dr. Sands knew a guy named Gilles Frydman—a crazy French Jew from Manhattan—who had started a network of cancer patient communities back in the 1990s using plain text emails.

I assert that that’s a good way to be a doctor. Be the expert on where to find valuable information.

The patient community I joined recommended surgery and high-dose interleukin 2. It worked. With immunotherapy, they didn’t have to cut me open to get rid of all those tumors. The stuff just went through my body and, boom! Aside from the nephrectomy to remove the primary tumor, all the rest just shrank.

Six months later, I had beaten stage 4 kidney cancer.

An unlikely advocate

A few years after my recovery, the British Medical Journal asked to publish my story. I asked my oncologist what he’d want other doctors to know about my case.

His answer surprised me: “You were really sick, and I don’t know if you could have tolerated enough medicine if you hadn’t been so well prepared.” He meant if I hadn’t been such an engaged, empowered patient.

My story caught fire. In 2009 I wrote a blog post about some garbage I’d discovered in my electronic medical record. The Boston Globe found my post and published a story about me on the front page. Suddenly this middle-aged guy sitting in his recliner in New Hampshire was getting invited to Washington for policy meetings.

HealthLeaders Magazine also came calling and made me part of a cover story titled “The Patient of the Future”—specifically, an engaged patient looking things up from his hospital bed. That year, their list of “20 people who make healthcare better” put me—and my doctor—at number three, right after renowned surgeon Atul Gawande and Dean Kamen, inventor of the Segway.

Imagine my shock. I had to ask myself, “Me, an innovator? I’m just a guy who almost died and didn’t.”

When experts don’t know what’s possible

Eventually I quit my day job and focused on writing and speaking about participatory medicine full time. My work focuses on a peculiar problem: sometimes what experts believe is possible lags far behind what’s already happening in the world.

Take the OpenNotes project, which studied what would happen if patients could see their doctor’s visit notes. Beforehand, surveys of doctors predicted disaster—patients would overwhelm offices with calls like, “Why’d you call me an SOB?” (You may know that means shortness of breath, but many patients don’t.)

The reality? At the end of the study, 99% of patients wanted to continue, and despite initial resistance, no doctor disconnected from the project. The senior physician who organized it said he’d never seen a research endeavor where 99% of one group and 100% of the other said, “Let’s do more of it.”

Today, it’s federal policy that patients must be able to access their doctor’s visit notes through their patient portal.

Or consider Dana M. Lewis, whose medical background consists of a public relations degree from Alabama. When she and her programmer boyfriend got tired of waiting decade after decade for the medical industry to deliver an artificial pancreas for her Type 1 diabetes, they built their own. They created software that runs on a pocket computer connecting to her glucose monitor and insulin pump. Since then, more than a thousand people have contributed to the open-source artificial pancreas project at OpenAPS.org.

At a conference in D.C., after a presentation about OpenAPS, an esteemed physician came to the microphone and said, “This is preposterous. You can’t possibly be doing what you say you’re doing.”

The presenter’s response? “You’re wrong, and we don’t need you anymore.”

The power of being equipped and engaged

My message isn’t anti-doctor. Far from it. Patient empowerment doesn’t mean that you reject science. My own survival depended on expert oncology and immunotherapy and wise clinicians who diagnosed my condition and administered my therapy.

But I believe strongly in what my late mentor, Dr. Tom Ferguson, called “e-patients”—patients who are equipped, engaged, empowered, and enabled. Today I have more data on my own health from my sleep ring, Apple Watch, and other devices than my physician does. I have no interest in rejecting him. He’s the doctor. He’s the one who knows what it all means. But I am accumulating more knowledge.

That accumulated knowledge creates opportunities for better collaboration between me and my doctor. When I walk into my physician's office with data and questions, we’re working together more effectively than ever before.

A word to veterinary professionals

I should mention that my wife, Virginia, is a retired veterinarian. She graduated from Michigan State back when her male classmates insulted her for “wasting a slot in the class” because they said she’d just go off and have babies. The punchline? About 20 years later, she was on the New England Board of Veterinary Medical Examiners, judging whether they were qualified to practice.

Virginia saw firsthand, working in dozens of different practices as a relief vet, what worked and what didn’t. She even published a letter in JAVMA discussing the importance of qualified veterinary technicians. She understood that good veterinary care isn’t about hoarding knowledge. It’s about building the right team and recognizing expertise wherever it lives.

The same principles apply to pet parents today. They’re Googling their pets’ symptoms and now asking ChatGPT. They’re joining online communities. They’re tracking data on their pets’ eating habits, activity levels, and behaviors in ways that weren’t possible a generation ago. And just like human medicine, some veterinary professionals worry about this trend.

Pet parents who come in informed and engaged aren’t your enemy. They’re your partners. Yes, they might come in with some misconceptions from Google or AI. But they’re also the ones who might notice subtle changes in their pet’s behavior, follow through on treatment plans, and ask the right questions because they’ve done their homework.

It’s important to acknowledge that the internet leads some people to bad information, and other people don’t know how to think clearly. But I ask professionals not to lower what they permit to the lowest common denominator. Instead, raise the ceiling of your expectations, to welcome, encourage, and develop patient engagement.

The question isn’t whether pet parents will get involved in their animals’ healthcare decisions—they already are. The question is whether you’ll welcome them as partners or resist them as nuisances.

What really matters

When I was lying in bed after my diagnosis, weeks before treatment started, I had a lot of time to think. I thought about my mother’s face at my father’s funeral a couple years earlier. I thought, what is she going to look like when she buries her son?

I thought about what the weather would be like the last time I looked out a window. I thought about my daughter.

Fortunately, in 2009, I got to walk that daughter down the aisle. She’s now a Boston Marathon runner. She became a biology teacher and earned her doctorate. And she gave me a very unusual Christmas present one year—a jigsaw puzzle in a homemade cardboard box. As I started putting it together, I realized what it was: her ultrasound, her way of telling me I was going to be a grandfather.

Countless times I’ve been grateful that she didn’t have to say to her mother, “I wish Dad could have been here to see this.”

Participatory medicine saved my life and then became my life’s work. I accidentally created a rhyme that sums it up well: The solution is not to restrict and restrain. Empower the people, enable and train.

In both human and veterinary medicine, the question is whether we’ll keep up with what’s newly possible—or get left behind believing things that are no longer true.

Note: This article is adapted from a keynote talk presented at the 2025 Veterinary Innovation Summit.

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Dave’s email: priority@epatientdave.com