The well known e-patient Dave deBronkart, will be a member of the Faculty at the ECPC AGM 2016 this week.
Dave deBronkart, known on the Internet as e-Patient Dave, is one of the world’s best-known evangelists for the patient engagement movement. A 2007 survivor of stage IV kidney cancer, he discovered the movement in 2008 and started blogging about it as a hobby. In 2009, he moved his electronic hospital data to a personal health record, which triggered a series of events that landed him on the front page of The Boston Globe (Wangsness, 2009). Invitations to attend policy meetings in Washington and give speeches followed. An accomplished speaker in his professional life, he has now participated in 450 healthcare events in 15 countries.
deBronkart is a child of the Sixties, which leads him to see the e-patient movement as a social revolution, parallel to civil rights and feminism. And as an MIT graduate, he also sees it as the natural evolution of a scientific field. When Dave deBronkart learned he had a rare and terminal cancer in January 2007, his doctor among other instructions, gave him a piece of paper with an online address for cancer patients communities. Dave turned to a group of fellow patients online — and found a medical treatment that even his own doctors didn’t know. It saved his life and he deploys the story in a piece he wrote for the BMJ: How the e-patient community helped save my life: an essay by Dave deBronkart. Now e-patientDave calls on all patients to talk with one another, know their own health data, and make health care better, one e-Patient at a time. In his famous TEDxMaastricht talk, that counts almost half a million views, he chanted “Let Patients Help” that now has become a book translated in several languages.
Dave’s TED Talk Let Patients Help went viral, and for years it’s 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.
You might wonder what the term e-patient means. Tom Ferguson – the founder of e-patients.net – coined the term e-patients to describe patients who are equipped, enabled, empowered and engaged in their health care decisions. Empowered and engaged patients don’t expect the system to do everything for them – they do everything in their ability to help out. e-patientDave’s advice: Get educated, get engaged, get empowered. Get E. But e-patientDave, nine years after his dreadful encounter with cancer has come to think that it’s time to move beyond empowerment and engagement, and get to the deeper issues. The culture of medicine changes slowly; most clinicians and scientists have never heard of e-patients. (Try asking one.) But whether or not anyone knows it’s happening, the change is underway. Medical authority is starting to view patients as active contributors, not passive recipients. (e-patientDave: The Patient’s Perspective: Medicine’s True North)
The growing e-patient movement has demonstrated that as the internet brings patients together with information and with each other, a new world of participatory medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians. Αfter completing his treatment in late summer 2007, e-patient Dave has become actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. He has abandoned his job in marketing to become an evangelist of patient participation, education, connection and empowerment from the USA thorough Australia to Europe.