After surviving a terminal cancer diagnosis, Dave deBronkart turned his experience into a global call for partnership between patients and providers.
In January 2007, Dave deBronkart was diagnosed with stage IV, grade 4 renal cell carcinoma, with a median survival estimate of only 24 weeks. Rather than passively accepting the prognosis, he immersed himself in patient communities online, researched treatment options, and accepted a clinical trial of high-dose interleukin-2, which ultimately led to a long-term remission.
During his process of care, he discovered that patients could play a far more active role in their health journey by being informed, involved and proactive – not just passive recipients of care. He connected with the “e-patient” movement (patients who are empowered, engaged, equipped and enabled) originally articulated by Dr. Tom Ferguson, and embraced that role himself. In 2009 and onward he emerged as a global keynote speaker on patient engagement and participatory medicine.
Today, deBronkart – often known by his online handle “e-Patient Dave” – is a prominent patient advocate, speaker and writer whose personal journey transformed into a mission for patient empowerment: the idea that patients should have access to their data, the ability to understand and ask meaningful questions, and the opportunity to participate as partners in their care rather than simply follow orders. He champions transparent health-care data, open access to medical records, and a shift from a paternalistic model toward a collaborative model (“Let Patients Help”).
He emphasizes that being an “e-patient” isn’t about replacing doctors or rejecting their expertise – rather, it is about joining forces with clinicians, so that the patient becomes a valuable resource in the health-care system rather than an under-used one.
In the following interview, deBronkart discussed the keys to patient empowerment in the U.S. healthcare system.
Repertoire: What role should health systems and clinicians play to support patient empowerment – and where should they step back?
deBronkart: Recognize that although you’re a business, it’s the patient who has the most at stake, and has the most to lose if all does not work out well. Some patients WANT to be taken care of passively. Others want to understand what’s going on.
Repertoire: How do you think policy or regulation (e.g. around data access, interoperability, privacy) needs to change to make real patient empowerment feasible at scale?
deBronkart: Empowerment has many dimensions, but I’ll just talk here about empowerment in the sense of the patient being fully informed. For that, we need real dashboards that summarize the thousands and thousands of data points. And to feed a dashboard, we need data that flows freely to the point of need. Today that’s far from reality: very few providers have fully enabled automatically sending a patient’s data anywhere, on demand. This keeps patients (and their other providers) in the dark.
Repertoire: How should we think about equity in empowerment – ensuring that marginalized or less-resourced patients aren’t left further behind?
deBronkart: Well, there’s no “ensuring” for anything cultural and especially not for anything involving resources. What we can do is firmly state our values – and strive. To strive for equity. What we can do is make it as practical and simple as possible for people to get at their medical information, so it’s not just such a damn struggle. We can act like we actually want them to have it, so they can help themselves.
Repertoire: Do you have stories or evidence where empowered patients have driven innovation, policy change, or quality improvements in care?
deBronkart: Well heck, the whole data access policy change was driven by empowered patients! There’s me hollering “Gimme my damn data” in my TED Talk and in speeches, there’s Regina Holliday grieving her husband Fred, and more.
Repertoire: Looking ahead 5-10 years, what would an ideal “patient-empowered” health ecosystem look like?
deBronkart: When patients have full power, they’ll be able to pursue things autonomously if they want. Doctors and nurses will still be plenty busy, but the burden on them will be less, and patients will be able to do more themselves, especially with the help of better and better chatbots.
Repertoire: How do you see the role of artificial intelligence or machine learning in helping (or harming) patient autonomy and decision-making?
deBronkart: It’s the natural next step. The Web and digital health tools have vastly increased how much information we can have, but it’s been hard to know what it all means. For that, generative AI is a profound transformation.
Repertoire: How do you foresee the relationship between patients and clinicians changing in a more empowered model of care?
deBronkart: Everyone’s talking about the new triad of care, and they’re right. AI will be a third partner. It won’t replace doctors, but it will sure offload a lot of the gruntwork.
Triad of Care
A new triad of care refers to a model in healthcare where patient care is increasingly managed by three key partners instead of the traditional two (doctor + patient). In this context:
1. The doctor (or clinician) – the medically trained professional, often the driver of most decisions.
2. The patient (or family/caregivers) – sometimes passive, but increasingly often an active participant in preferences and priorities.
3. Generative AI (artificial intelligence) – the new third partner – the first automated tool ever that has clinical reasoning and access to vast literature. Used by both clinicians and patients, its roles can range from intake interviews to data analysis to triage to fact checking – though the AI itself must be fact-checked too.
AI isn’t there to replace physicians but to complement them. By offloading both “grunt work” and initial patient interactions, AI makes care more efficient, provides timely support to patients, and allows doctors to focus on critical thinking, patient interaction, and complex decision-making.