The Quantified Patient Quantified Self Show&Tell December 7, 2009 @ePatientDave

Patient is not a third-person word. Your time will come – you will care about this.

“The Citizen Scientists” “United by the Net and emboldened by their numbers, parents of desperately ill children are funneling millions into research, building vast genetic databases, and rewriting the rules of the medical industry” American Society of Journalists & Authors 2002 Writing Award Outstanding Article of the Year: Reporting on a Significant Topic

Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are

I’m like JFK: “They sank my boat”

The Engaged e-Patient 12 items in my pre-appointment “agenda” email

The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”

Multiple tumors in both lungs (WTF?) Where’s This From??

Primary Tumor: Kidney

E-Patient Activity 1: Researching my condition

Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks

E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)

E-Patient Activity 3: Reading (and sharing) my hospital data online

Quantify it!

Treatment: Track the Data During a lethal threat the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I’m helpless / there’s nothing I can do”

Kickapoo Joy Juice: Booyea.

Medicine: Miracles. Health IT: Not so much.

“When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”

How good is your PHR? Mine: 2 specialist visits in September ENT - Septum issue Dermatologist Forehead lesion won’t go away Crusty thing on scalp Toe 4 conditions, 2 treatments received DISEMPOWERING

I want my mash-ups. Why shouldn’t innovation happen in hospital data like it does in phones and iPods?

Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com

Why not “Google Earth for my body”?

Why not? Because the Quantified Patient is in prison. Innovators can’t get at the data to add value.

“Raw Data Now!” (Tim Berners-Lee, 2009)

Enable Participatory Medicine.

Society for Participatory Medicine “a cooperative model of health care that encourages and expects active involvement by all connected parties as integral to the full continuum of care.” Led by a partnership of physicians and patients Journal: JoPM.org ParticipatoryMedicine.org

Are You Q? Your time will come. @ePatientDave ePatientDave.com facebook.com / ePatientDave dave@ePatientDave.com