Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated ‘Let Patients Help: A Patient Engagement Handbook’ and one of the world’s leading advocates for patient empowerment. After beating stage IV kidney cancer in 2007 he has become a blogger, health policy advisor and international keynote speaker.
Nine years ago you were diagnosed with terminal cancer. You turned to a group of patients online and found the right medical treatment. Since then you call yourself e-patient Dave. How do you define an e-patient?
The word e-patient comes from ‘Doc Tom’ Ferguson, who was a great leader in patient empowerment. He talked about patients who were "empowered, engaged, equipped, enabled." He first wrote about e-patients in the BMJ in 2004, in the first generation of e-patients.
You consider the patient the most underused resource in healthcare. How can we change the relationship between patients and healthcare providers?
It was first said in the 1970s by Dr. Warner Slack, who is now a senior physician at my hospital (Beth Israel Deaconess in Boston). His colleague Dr. Charles Safran quoted him about it in testimony to the U.S. Congress. And I agree! We can change the relationship by teaching people - both patients and clinicians - what has changed in the past 20-30-40 years. When I was a child, and when many doctors were trained, patients had no ability to find important new medical information. Now we know that thousands of new articles are published every day so it is not possible for any doctor to know everything that might be important. It's important to understand that patients can help find useful information, but this doesn't mean they have become oncologists. There is still no substitute for the trained mind with years of clinical experience. However, if a doctor thinks this has not happened, that doctor will be out of date, and this is a real problem, the same as if a doctor did not know about an important new medicine. So, to change the relationship between patients and providers, one of the best places to start is for everyone to realize that things have changed in the last 20 years, so new things are possible. That lets us all think, "Okay, good! What can we do differently, to make the best healthcare?"
When new information is in the hands of patients, it changes the structure of knowledge and power
You support the use of internet as a source of documentation for the patients. How can the patients pick out the right information about health?
This is not easy because the internet is full of gold and garbage, and at first they look the same. It takes time to learn, and the best place to get help is from your own doctors and nurses! This is why it's a pity when the doctors and nurses say "Don't do that - stay off the internet." That forces patients to get their information from other sources. This is exactly the same as when parents and doctors would not talk to teens about drugs and sex because "you shouldn't be doing that." It simply did not work, and in both cases, some teens eventually died because of their ignorance and their parents being afraid of the subject. Instead, the best thing is for the parent or the provider to be the teacher so the patient (or child) will always bring questions to the person they trust.
You also defend that the patients should have access to their personal health records.
Yes. In my book I say "We perform better when we're informed better." We have many stories where an empowered, engaged patient understood their condition better when they read what the doctor wrote. For more information about this, see the "OpenNotes" study at MyOpenNotes.org - it showed many excellent benefits and almost no harm.
You are co-founder of the Society for Participatory Medicine. Which are the goals of this institution and what have you already achieved?
Our website says our mission is to "To catalyze collaborative partnerships across the continuum of care to optimize health and health care." More simply, that means we want to create change, as I said above - to create better health and better care. Why do we say it will be better? Because if patients are an under-used resource, then medicine cannot possibly achieve its best, right?
Is it possible to transform healthcare through digital patient engagement?
Well, I have an engineer mind, so immediately I want to know your definitions. In business sometimes "transform" means nothing except "Let's try something new.” But this is healthcare, and I want our thoughts to be more substantial. To me transform means "change the structure of things, so that new actions and outcomes become possible." Most definitely, when new information is in the hands of patients, it changes the structure of knowledge and that changes the structure of power, and that makes new things possible! So, by these definitions, the answer is undeniably yes.
“If patients are an under-used resource, then medicine cannot possibly achieve its best”
Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated ‘Let Patients Help: A Patient Engagement Handbook’ and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. An accomplished speaker in his professional life before cancer, he is today the best-known spokesman for the patient engagement movement, attending nearly 500 conferences and policy meetings internationally, including testifying in Washington for patient access to the medical record under Meaningful Use.
A co-founder and Chair Emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Society for General Internal Medicine Forum, iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice.
Dave’s TED Talk Let Patients Help went viral, and for years was in the top half of the most viewed TED Talks of all time with over a half million views. Volunteers have added subtitles in 26 languages, indicating the global appeal of his message. In 2012 the National Library of Medicine announced that it’s capturing his blog in its History of Medicine Division, he serves on the BMJ’s patient advisory panel, and he was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine.
UVic Health Meeting
Dave DeBronkart was one of the keynote speakers of the UVic Health Meeting, an event on health sector organized by the University of Vic - University of Catalonia (UVic-UCC) once a year. The objectives of the meeting are to strengthen the commitment of the UVic-UCC with the health sector, and consolidate the relationship between professionals, business and academia to reinforce the health sector.
Jose L. Cánovas