Authentic Value:Being Known in

e-Patient Communities“e-Patient Dave” deBronkart

@ePatientDave

e-Patient Connections 2009October 26, 2009

How I came to be here today• High tech marketing (TimeTrade Appointment

Systems)

• Online community leader since 1989• Data geek; tech trends; automation• 2007: Cancer kicker• 2008: E-Patient blogger• 2009: Participatory

Medicine, Public Speaker

John Sharp, Cleveland Clinic:

“If you have not read the e-Patient White Paper, you do not understand the future of medicine.”

Part 1: Participatory Medicine

Launched last week: jopm.org @JourPM

Journal of Participatory Medicine• Taking it

“from anecdote to evidence”

• Peer reviewed for and by providers, patients, and all

• Open access (free)

• Co-Editors are a physician and lay editor/patient

Foundation Principles• Patient is not a third-person

word.• Your time will come.

• “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

From JoPM…

• “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 confidenceone 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 FindingRoutine 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 shockyou’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)

Engaged patients are also finding value and advicein communities and networks. “Off the radar”

Look: genuine value is being generated

outside our perceived ecosystem.

Ignore this shift in theecosystem at your peril.

Conventional view of healthcare economics

is about what providers do (and could do)

to create and deliver value

Part 5: Connecting the Dots

Think about this:

How do you establish an influential role in

these e-patient

conversations?

Their (our) lives and health are at stake.

The treatment worked.Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm

50 weeks: 20x12 mm

What next?

The patient becomes an influencer.

Pay it forward.Start a blog, to teach.

Write on other blogs.

Contribute to my hospital’s outreach

(They asked me to be in a video)

Use social media to share info that other

patients asked for•Driven by patient questions in my ACOR community

•My idea, not the hospital’s

•Cost to hospital: $0

(btw, sometimes I outdo them 8^) )

(They gave up on editing the podcasts and just linked to my blog!)

Use social media to share info that other

patients asked for•Driven by patient questions in my ACOR community

•My idea, not the hospital’s

•Cost to hospital: $0

•Production values: not so hot… but:

•Authenticity: 100%

Authenticity drives this.

Don’t screw it up.

Be real.Contribute value.

Be known for being real.and contributing value.

It’s DTC without the spend. Protect your reputation.

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 @ePatientDavedelicious.com/ePatientDave facebook.com/ePatientDave

Join the Society: ParticipatoryMedicine.org

Read the Journal (free): JoPM.orgSubmit articles!