E-Patients: Empowered, Engaged, Equipped, Enabled – ”e-Patient Dave” de Bronkart; Co-Chairman, Society for Participatory Medicine

1. E-Patients: Empowered, Engaged, Equipped, Enabled “e-Patient Dave” deBronkart@ePatientDave facebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

2. “I want to note especially the importance of the resource that is most often under-utilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess and Harvard Medical SchoolTestimony to the House Ways & Means subcommittee on health, 2004

3. How I came to be here today High tech marketing Data geek; tech trends; automation 2007: Cancer kicker 2008: E-Patient blogger 2009: Participatory Medicine, Public Speaker 2010: full time

4. JAMIA, 1997 1997

5. e-Patients.net founderTom Ferguson MD 1944-2006 Doc Tom said… Doc Tom said,“e-Patients are Equipped Engaged Empowered Enabled”

6. Empowered:Speaks up. Expresses wants.Responsible for care choices.

7. Engaged:Actively involved.Not a passive “care receptacle.”

8. Note: Just being online no longer qualifies one as an e-patient.

9. The Engaged Patient, 2006 Some of the 12 items in my pre-appointment “agenda” email

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

11. Multiple tumors in both lungs Where’s This From?? Where’s This From??

12. Primary Tumor: Kidney

13. E-Patient Activity 1 E-Patient Activity 1:Researching my condition

14. Classic Stage IV Classic Stage IV, Grade 4Renal Cell Carcinoma Illustration on the drug company’s web site

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

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

17. E-Patient Activity 4:My own social support network(CaringBridge.org - family and friends - journal & guestbook)

18. E-Patient Activity 5:Tracking my Data

19. Baseline: 39x43 mm 50 weeks: 20x12 mm Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe

20. E-Patient Activity 6:Start a blog (pay it forward)

21. John Sharp, Cleveland Clinic: “If you have not read the e-Patient White Paper, you do not understand the future of medicine.” John Sharp

22. Society for Participatory Medicinewww.ParticipatoryMedicine.org “Participatory Medicine is a movement in which networked patients shift from being mere passengerstoresponsible driversof their health, and in which providers encourage and value themasfull partners.”

23. Launched last fall: jopm.org @JourPMJournal 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

24. NLM ePatient Conference SPM invited to speak Two e-Patients presented

25. Medicine 2.0 Congress Invited by Dr. GuntherEysenbach to deliver the opening keynote at the Medicine 2.0 Congress Toronto, September 2009

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

27. Why not “Google Earth for my body”?