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Governing Personal Data in ResearchKit Mobile Studies - Wireless Health 2015


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Governing Personal Data in ResearchKit Mobile Studies - Wireless Health 2015

  1. 1. We focus on a world where biomedical research is about to fundamentally change. We think it will be o8en conducted in an open, collabora1ve way where teams of teams far beyond the current guilds of experts will contribute to making be9er, faster, relevant discoveries
  2. 2. helping data users work together, when they don’t work together.
  3. 3. Selected Hosted Consortia and Projects DREAM challenges NIH-Alzheimers Accelerating Medicines Partnership Common Mind NIMH Consortium TCGA Pan-Cancer Consortium Colorectal Cancer Subtyping Consortium
  4. 4. 1. mobile brings prediction, massive sample sizes, machine learning.
  5. 5. the right to combine and mine…
  6. 6. 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
  7. 7. To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
  8. 8. “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…”
  9. 9. data scale requires different approaches to hypothesis formation.
  10. 10. includes timing of medications
  11. 11. includes timing of medications
  12. 12. individual progression
  13. 13. high-dimensional data
  14. 14. 62 y old Man 67 y old Woman same medicine, different impacts
  15. 15. “loads and reliefs” affect the efficacy of medication
  16. 16. the big payoff comes from recombining studies… which means no security via withholding.
  17. 17. radical honesty > radical restrictions informed consent is the key.
  18. 18. 2. how can we increase informedness in mobile or digital consent?
  19. 19. (not informed consent)
  20. 20. comprehension language time format
 regulatory liability
  21. 21. 1. tiered information presentation 
 2. “pictorial” dominant on first information
 3. text dominant on second information tier
 4. require perfect score on short assessment
  22. 22. initial metaphor
  23. 23. mPower (Parkinsons Disease) Share the Journey (Breast Cancer Survivor)
  24. 24. 30
  25. 25. 31
  26. 26. study “narrative”
  27. 27. screen structure
  28. 28. navigation to/from reinforces concept
  29. 29. changeable by participant
  30. 30. >70,000 enrolled since 9 March (~75% choose to share broadly)
  31. 31. “participant centric consent toolkit” This project was supported by the EDM Forum via grant number U18HS022789 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency of Healthcare Research and Quality.
  32. 32. iconographic representations of key concepts in informed consent open source methods
  33. 33. design layouts
  34. 34. workflows
  35. 35. web templates and assets
  36. 36. reduce, reuse, recycle!
  37. 37. 3. governance beyond consent
  38. 38. changeable by participant
  39. 39. even stock photo sites are confused about qualified users
  40. 40. identity test oath
  41. 41. what is informedness, and how does it change over time?
  42. 42. is a design illuminating, or obscuring? drawing eyes to second cheapest ticket
  43. 43. how to reconcile tech culture and clinical research?!
  44. 44. where’s the line between hope and hype?
  45. 45. where’s the line between patient engagement and targeting?
  46. 46. thank you @sagebio @wilbanks