About
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:
Finding valuable unpublished information: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!
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.
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.
