This document discusses the concept of participatory medicine and the role of patients in their own care. It makes three key points: 1) Meaningful use standards for electronic health records must include patient access to medical records and data. 2) Foundational principles of participatory medicine include that the patient is not a third party and has the right to access and share their own medical data and pursue different treatment options. 3) When patients are empowered and engaged through access to health information and online communities, they can help advance medicine by sharing their experiences, findings new treatment approaches, and identifying gaps in research.

1. Participatory Medicine e-Patients.net founder Tom Ferguson MD

2. Patients can help. Let us. If you remember nothing else… Takeaway #1

3. Meaningful Use must include patient access. Takeaway #2

5. The Incidental Finding “ Your shoulder will be fine … but there’s something in your lung”

6. “ Textbook” Stage IV, Grade 4 Renal Cell Carcinoma Actual illustration of Stage 4 RCC from Proleukin.com, with my additional lesions added

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

9. E-Patient Activity 1 : Reading (and sharing) my data online

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

11. ACOR is great. I posted two messages tonight and got responses in 4 and 11 minutes. One responder also sent a private note mentioning Robin and Cathy. The other responder was Cathy. :) Through that list I've also found several other useful sites. Patient communities: Responsive. What patients need. Virtually no cost. (Way cheap. Not free.)

12. Please: 1% for the patients. Patient communities do a whole lot of good for a little bit of cash. Whatever we spend, let’s set aside just 1% to help patient communities help themselves. Note: this is an audience where you don’t have to motivate adoption. Time-to-benefit is nearly instant.

13. The treatment worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm

14. What next? Pay it forward. Start a blog, to teach.

15. E quipped E ngaged E mpowered E nabled” Doc Tom said, “e-Patients are

16. Let patients help. You will want to help when your time comes.

17. Lindberg (NLM): 400 years. “ 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.

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

19. Lives are at stake. Docs are squeezed for time. What do you do?

20. Let patients help.

21. Industrial-Age Medicine The ability to create value belonged to those who controlled the “means of production” (Doc Tom’s early vision of how access to information would turn healthcare on its head…)

22. Information-Age Medicine Internet access to the “means of production” (information) means all of us can contribute, create value, participate.

23. That’s participatory medicine.

24. Doc Tom foresaw it all within months of the Mozilla browser’s birth in April 2004

25. So: will “consumers” pull for EMR adoption? Look at the citizen trend. (Source: Pew 2009) Online Broadband 2000: 46% x 5% (54% not online) 2008: 74% x 57% (26% not online) Regulate in 2009 for where the puck will be in 2020

26. False medication warning The hospital transmitted every condition I ever had, with no dates; all were stated as current “ When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”

27. Lesson: Unmanaged data quality produces trainwrecks

29. Patients can help. Let us.

30. Meaningful Use must include patient access.

31. Enable Participatory Medicine Because health professionals can’t do it alone.