Innovation Matters

Innovation that matters to you

Knowledge is Power. Power to the people

For healthcare to achieve its best, empower the patient and family.

 

 

“e-Patient Dave” deBronkart

 

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term “e-patient” was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

 

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

 

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

power to the people tumor map

Finding valuable unpublished information:

In 2007 I almost died of Stage IV, Grade 4 renal cell carcinoma – the final stage of a lethal disease. Luckily for me, my physician Dr. Danny Sands had known “Doc Tom” so he knew of an excellent online community of kidney cancer e-patients, and suggested I join them. There I learned a tremendous amount that goes beyond the medical literature. I would always confirm things with my oncologist, and today he says he’s not sure I could have survived if I hadn’t been so involved!

power to the people mom sister

Chart errors:
Did you know most medical records contain mistakes? [Wall Street Journal, June 2014] They’re not always life-threatening, but sometimes they are. When my mother had a hip replacement and was discharged to rehab, her thyroid diagnosis was transcribed wrong, so the best doctor in the world could have prescribed a medicine that did real harm! But I have empowered sisters and they asked to see the chart … and the provider welcomed their engagement. The mistake was corrected and the harm was prevented, at no cost to anyone. Go thou and do likewise!

 

Better follow-up through Open Notes:

On a much simpler level, my hospital has enabled Open Notes – a simple software change that lets me see every word they’ve written about me. After one routine appointment, I logged in from home to remind myself of what they’d told me to do. I was a better patient without bothering the office.

 

In all three cases you can see how, as Francis Bacon famously said, “Knowledge is power.” Dr. Sands often cites that in his speeches.

 

Yet many providers still prefer to keep a distance between the ultimate stakeholder – the patient - and medical knowledge. If healthcare is going to achieve its potential, we must all operate at our potential, and it follows that to keep people from information is to disempower them.

power to the people screenshot

The establishment’s getting on board: The Institute of Medicine’s report Best Care at Lower Cost says of the four pillars of a learning health system, the first is information and the second is “patient-clinician partnerships” with “engaged, empowered patients.” Hear that? It’s simply obsolete, now, to not empower us with information.

 

The best healthcare companies are making it a reality. Philips, for example, are empowering people to live healthier lives across what they term the ‘health continuum’: from Healthy Living to Disease Prevention, Diagnosis, Treatment and Home Care.
 

These are exciting initial steps, but we need to ensure they keep heading along the right road. The digital revolution has changed the world and it’s changed what people want; it’s time medical care advance this change too.

 

To view e-Patient Dave’s full speech at Philips Innovation Night click here.

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 300 conferences and policy meetings internationally, including testifying in Washington for patient access to the medical record under Meaningful Use.

 

A co-founder and current co-chair 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, 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.

 

Visit his website at http://www.epatientdave.com/

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