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Open Competition for Mobile Health Studies

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Closing keynote, http://defragcon.com

Published in: Health & Medicine
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Open Competition for Mobile Health Studies

  1. 1. “being there” how open competition makes mobile health research better @wilbanks defrag 2015
  2. 2. 1. “competition from the open” changes markets
  3. 3. The freedom to run the program as you wish, for any purpose (freedom 0). The freedom to study how the program works, and change it so it does your computing as you wish (freedom 1). The freedom to redistribute copies so you can help your neighbor (freedom 2). The freedom to distribute copies of your modified versions to others (freedom 3). from http://www.gnu.org/philosophy/free-sw.en.html, available to public under CC BY-ND 4.0
  4. 4. changes how the rest of the market treats its users…and developers.
  5. 5. changes how the rest of the market treats its readers…and developers.
  6. 6. how do we do the same thing for clinical trials?
  7. 7. We focus on a world where biomedical research is about to fundamentally change. We think it will be often conducted in an open, collaborative way where teams of teams far beyond the current guilds of experts will contribute to making better, faster, relevant discoveries
  8. 8. what’s it mean to be “non profit, open source” in heavily regulated / SaaS world?
  9. 9. 2. “full stack” open clinical studies
  10. 10. “Investigators will meet annually in-person with each participant to assess and record progression … every six months, the team will conduct phone and mail surveys regarding diagnosis, medications, and other impacts of the disease…”
  11. 11. mobile brings prediction, massive sample sizes, machine learning.
  12. 12. To predict whether or not we’ll click on ads, Facebook / Amazon / Google have longitudinal data on individuals. where i’ve been, 
 where i’m going
  13. 13. To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
  14. 14. mPower (Parkinsons Disease)
  15. 15. 21
  16. 16. 59,700 downloads from app store 16,585 participants consented (28% of total downloaded) 15,185 participants enrolled (92% of all consented) 17% of participants who completed enrollment survey indicate a diagnosis of Parkinson disease (1501/8715)
  17. 17. includes timing of medications
  18. 18. includes timing of medications
  19. 19. high-dimensional data
  20. 20. individual progression
  21. 21. 62 y old Man 67 y old Woman same medicine, different impacts
  22. 22. “loads and reliefs” affect the efficacy of medication
  23. 23. “scorecards” for individual disease features
  24. 24. 3. the real payoff: recombinant data
  25. 25. the right to combine and mine…
  26. 26. (not informed consent)
  27. 27. comprehension language time format
 regulatory liability
  28. 28. 36
  29. 29. study “narrative”
  30. 30. changeable by participant
  31. 31. 59,700 downloads from app store 16,585 participants consented (28% of total downloaded) 15,185 participants enrolled (92% of all consented) 17% of participants who completed enrollment survey indicate a diagnosis of Parkinson disease (1501/8715) 78% share their data worldwide
  32. 32. identity test oath
  33. 33. get the data into a reusable environment by default
  34. 34. feed the data into other projects…
  35. 35. constantly ask: how to enable deep learning?
  36. 36. for those who need lots of data users, fast…
  37. 37. so what?
  38. 38. how the market acts without disruption
  39. 39. what’s it mean to be “non profit, open source” in heavily regulated / SaaS world?
  40. 40. 1.make the data a public good.
 2.commoditize the service costs.
 3.disrupt in a way that empowers 
 patients and developers.
  41. 41. thank you http://sagebase.org/ @sagebio @wilbanks

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