The document discusses the rise of participatory medicine and engaged patients, often referred to as "e-patients". It notes that patients are increasingly seeking health information online and connecting with peers. When patients are informed and engaged in their care, it can improve health outcomes. The future of medicine relies on recognizing patients as partners in their care.

1. Let Patients Help Participatory Medicine: Reshaping the Care Relationship “ e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email_address]

2. E quipped E ngaged E mpowered E nabled” Doc Tom said, “e-Patients are e-Patients.net founder Tom Ferguson MD 1944-2006

5. “ 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 quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

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

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

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

9. Primary Tumor: Kidney

10. E-Patient Activity 1 : Researching my condition

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

12. Facing the Grim Reaper

13. My mother

14. My daughter

15. After the shock you’re left with the question: What are my options? What can I do?

16. Get engaged. Get it in gear. Do everything you can.

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

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

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

20. E-Patient Activity 5: Tracking my Data During a serious disease, 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”

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

22. Nice curve!

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

24. Get educated / get engaged

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

26. “ e-Patient?” I know one when I see one.

27. Question:

28. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?

29. Because of the Web, Patients Can Connect to Information and Each Other (and to Doctors)

30. Dr. Lindberg: “ If I read two journal articles every night, at the end of a year I’d be 400 years behind.” It’s not humanly possible to keep up. 400 years

31. The lethal lag time: 2-5 years During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.

33. Compare with - “To Err is Human” (98,000 deaths/yr Nov 1999 ) Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search) - HHS Inspector General (15,000/mo Nov 2010 ) - NEJM No. Carolina (No improvement Nov 2010 )

34. “ It may be more dangerous not to google “ your condition.”

35. “ These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo .. were anti-astronomer.” Patients can simply contribute more today than in the past.

36. Society for Participatory Medicine www.ParticipatoryMedicine.org “ Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. ”

37. Participatory medicine brings shared responsibility Blog post, Dec. 2008 Stanley Feld, MD

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

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

44. 2.8 e-Patient Years in Pictures… December 2006 October 2007 September 2009 May 2009

45. “ 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 quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

46. Let Patients Help Participatory Medicine: Reshaping the Care Relationship “ e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email_address]