“ Patients of the Future” are connecting. Get on the Cluetrain.
The old pathways are dying. New ones are growing. Get with it or miss the train.
Part 2: The Cluetrain
Cluetrain Manifesto, 1999: “Markets are Conversations”
30 years ago the “marketing funnel” was this: (Graphics by Forrester)
Today’s buyer progresses like this: (This is chaos – you can’t control it. Just gotta jump in and swim with the people.)
“ Authoritative information” in medicine is changing
“ After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.”
“ Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant”
“ Most of what appears in peer reviewed journals is scientifically weak”
Richard Smith, 25 year editor of the British Medical Journal
Part 3: Authority is changing
MedScape founder Peter Frishauf ’s sidebar comment on Smith’s essay:
“ If ever there was a case of becoming a vegetarian after working in the slaughterhouse it is that of Richard Smith.
“ Better than anyone, Smith uses evidence and experience to demolish any confidence one might still have in traditional medical peer review.”
What does Frishauf propose? Reputation systems. (Like Amazon and eBay. Per Esther Dyson’s Release 1.0, October 2003)
I said “Your time will come.” Mine did. Part 4: Personal Relevance
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “ Your shoulder will be fine … but there’s something in your lung” The shadow was a golf-ball size tumor: kidney cancer that had spread throughout the body
“ Textbook” Stage IV, Grade 4 Renal Cell Carcinoma My lesions matched the numbered ones on this illustration on Proleukin.com. I added other marks to show where mine were. Just before treatment started, the cancer erupted from my tongue.
My Googling said:
“ Outlook is bleak”
“ Prognosis is grim”
“ Median survival: 24 weeks”
After the shock you’re left with the question: What are my options? What can I do?
Get engaged. Get it in gear. Do everything you can. Go “e.”
E-Patient Activity 1 : Reading (and sharing) my hospital data online
E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
Please: 1% for the patients. Patient communities do a whole lot of good for a little bit of cash. They’re NOT free. Whatever we spend, let’s set aside just 1% to help patient communities help themselves.
E-Patient Activity 3: My own social support network (CaringBridge.org - family and friends - journal & guestbook)
Look: genuine value is being generated outside our perceived ecosystem.
Ignore this shift in the ecosystem at your peril.
Part 5: Connecting the Dots Engaged patients are also finding value and advice in communities and networks. “Off the radar” Conventional view of healthcare economics is about what providers do (and could do) to create and deliver value
Think about this: How do you establish an influential role in these e-patient conversations?
2.8 Years in Pictures… December 2006 – dying of cancer and didn’t know it October 2007 – office Halloween party September – the engaged patient becomes a first-time fundrider! my bone surgeon, and my leg with “make-up” May 2009 – with Mom at my daughter’s wedding
ePatientDave.com: Patient Engagement consulting, speaking, analysis, social media
Engage Authentically. Earn Love. Be Known. dave@ePatientDave.com @ePatientDave delicious.com/ePatientDave facebook.com/ePatientDave Join the Society: ParticipatoryMedicine.org Read the Journal (free): JoPM.org Submit articles!