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“ Gimme My Damn Data” Medicine 2.0 September 17, 2009
Participatory Medicine http://ParticipatoryMedicine.org @s4pm e-Patients.net founder Tom Ferguson MD 1944-2006
Foundation Principles ,[object Object],[object Object],[object Object],[object Object],[object Object]
Realities ,[object Object],[object Object],[object Object]
My story, Part  1 : Cancer
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
“ 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.
 
Facing the Reaper
My mother
My daughter
After the shock you’re left with the question: What are my options? What can I do?
Get engaged. Get it in gear. Do everything you can.
E-Patient Activity  1 : Reading (and sharing)  my hospital data online
E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
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.)
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.
E-Patient Activity 3: My own social support network (CaringBridge.org - family and friends - journal & guestbook)
The treatment worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
What next? Pay it forward. Start a blog, to teach.
Part 2: Discovering “e-patient” (January 2008)
E quipped E ngaged E mpowered E nabled” Doc Tom said, “e-Patients are
Let patients help. You  will want to help when your time comes.
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.
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.
Lives are at stake. Docs are squeezed for time. What do you do?
Let patients help.
Doc Tom had an early vision  of how our access to information would turn healthcare  … on its head…
Industrial-Age Medicine The ability to create value belonged to those  who controlled the “means of production” (information) Healthcare before the internet:
Information-Age Medicine Internet access to information means all of us can contribute, create value, participate. Healthcare  with  the internet:
That’s participatory  medicine.
Doc Tom foresaw it all within months of the Mozilla browser’s birth in April 1994
Note: participatory medicine often brings  a shift in shared  responsibility
Part 3: Applying high tech trend analysis (2009)
09/20/09 Copyright Clayton M. Christensen Centralization followed by decentralization: Computing Used with permission Highly specialized  skills Expensive equipment Specialized environment
Such innovations depend on processes becoming reliable and the data being mobile.
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
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
Consider the impact (in any process) of introducing game-changing new information earlier in the process Life starts here Path taken by life What if awareness happened earlier? (What’s the impact of having information earlier?) ,[object Object],[object Object],[object Object],[object Object],Moment of awareness
Psoas muscle (My kidney tumor was encroaching on it)  The view I created on VisibleBody.com
Why not “Google Earth for my body”?
HealthLeaders “Patient of the Future”
That’s the vision. Where are we today?
Part 4: Walking the walk – moving my data to an online PHR
“ 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
Lesson: Unmanaged data quality produces trainwrecks ,[object Object],[object Object],[object Object],[object Object]
Takeaway: H IT needs to follow  normal  IT best practices ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Another data quality risk:  the MIB ,[object Object],[object Object],[object Object],[object Object]
What’s in  your  wallet, medically? ,[object Object],[object Object],[object Object],[object Object]
Danny Sands (my primary physician): “ How can patients participate   if they can’t see their data?”
Clay Shirky A serious internet visionary says… ,[object Object],[object Object]
[object Object],[object Object],[object Object]
“ Raw Data Now!” (Tim Berners-Lee, 2009) ,[object Object]
[object Object],[object Object],[object Object],[object Object]
Part 5: ePatientDave.com
2.8  Years in Pictures… September 2009 May 2009 December 2006 October 2007
Could it be … ,[object Object],[object Object]
. Give us our data Thank you. [email_address]

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Gimme My Damn Data

  • 1. “ Gimme My Damn Data” Medicine 2.0 September 17, 2009
  • 2. Participatory Medicine http://ParticipatoryMedicine.org @s4pm e-Patients.net founder Tom Ferguson MD 1944-2006
  • 3.
  • 4.
  • 5. My story, Part 1 : Cancer
  • 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.
  • 8.  
  • 12. After the shock you’re left with the question: What are my options? What can I do?
  • 13. Get engaged. Get it in gear. Do everything you can.
  • 14. E-Patient Activity 1 : Reading (and sharing) my hospital data online
  • 15. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
  • 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
  • 20. What next? Pay it forward. Start a blog, to teach.
  • 21. Part 2: Discovering “e-patient” (January 2008)
  • 22. E quipped E ngaged E mpowered E nabled” Doc Tom said, “e-Patients are
  • 23. Let patients help. You will want to help when your time comes.
  • 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:
  • 32. Doc Tom foresaw it all within months of the Mozilla browser’s birth in April 1994
  • 33. Note: participatory medicine often brings a shift in shared responsibility
  • 34. Part 3: Applying high tech trend analysis (2009)
  • 35. 09/20/09 Copyright Clayton M. Christensen Centralization followed by decentralization: Computing Used with permission Highly specialized skills Expensive equipment Specialized environment
  • 36. Such innovations depend on processes becoming reliable and the data being mobile.
  • 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
  • 39.
  • 40. Psoas muscle (My kidney tumor was encroaching on it) The view I created on VisibleBody.com
  • 41. Why not “Google Earth for my body”?
  • 43. That’s the vision. Where are we today?
  • 44. Part 4: Walking the walk – moving my data to an online PHR
  • 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
  • 46.
  • 47.
  • 48.
  • 49.
  • 50. Danny Sands (my primary physician): “ How can patients participate if they can’t see their data?”
  • 51.
  • 52.
  • 53.
  • 54.
  • 56. 2.8 Years in Pictures… September 2009 May 2009 December 2006 October 2007
  • 57.
  • 58. . Give us our data Thank you. [email_address]

Editor's Notes

  1. ****************** SEVEN WHEELCHAIRS *****************