6. The Incidental Finding Routine 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
7. “ Textbook” Stage IV, Grade 4 Renal Cell Carcinoma My lesions matched this illustration of Stage 4 RCC on Proleukin.com, with many more. Median survival time was 24 weeks after diagnosis; I was on the way out.
16. 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 are responsive. People discuss what to do, what to know. At virtually no cost. (Cheap. Not free.)
17. 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.
18. E-Patient Activity 3: My own social support network (CaringBridge.org - family and friends - journal & guestbook)
19. The treatment worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
24. 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.
25. 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.
26. Lives are at stake. Docs are squeezed for time. What do you do?
28. Doc Tom had an early vision of how our access to information would turn healthcare … on its head…
29. Industrial-Age Medicine The ability to create value belonged to those who controlled the “means of production” (information) Healthcare before the internet:
30. Information-Age Medicine Internet access to information means all of us can contribute, create value, participate. Healthcare with the internet:
35. 09/20/09 Copyright Clayton M. Christensen Centralization followed by decentralization: Computing Used with permission Highly specialized skills Expensive equipment Specialized environment
37. 09/20/09 Copyright Clayton M. Christensen Used with permission The decentralization that follows centralization is only beginning in healthcare Surgical suites High-speed multi-channel testers Imaging: MRI, CT, PET Scanners
38. Copyright Clayton M. Christensen used with permission Polishing Dept. Turning machines Hobbing department Tapping equipment Boring machines Stamping machines De-burring machines Annealing furnace Shipping Department Cut-off saws Office area Storage Path taken by product A A starts here Path taken by product B B starts here
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40. Psoas muscle (My kidney tumor was encroaching on it) The view I created on VisibleBody.com
45. “ When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.” The hospital transmitted every condition I ever had, with no dates; all conditions were shown as current False medication warning
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50. Danny Sands (my primary physician): “ How can patients participate if they can’t see their data?”