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Achieving Excellence in Clinical Health - Plenary Talk

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Slides from talk at https://www.advocatehealth.com/documents/Brochure%20AchievingExcellence%20in%20Clinical%20Research%20-%20Final.pdf

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Achieving Excellence in Clinical Health - Plenary Talk

  1. 1. 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
  2. 2. helping data users work together, when they don’t work together.
  3. 3. TCGA Pan-Cancer Consortium
  4. 4. doi:10.7303/syn1710680.4 TCGA Pan-Cancer Consortium
  5. 5. 6
  6. 6. 7 A B C D E F 1 2 3 4 5 6 groups datasets subtypes
  7. 7. 8 A B C D E F 1 2 3 4 5 6 G ...
  8. 8. Selected Hosted Consortia and Projects DREAM challenges NIH-Alzheimers Accelerating Medicines Partnership Common Mind Consortium Cancer Genome Atlas Pan- Cancer Consortium Colorectal Cancer Subtyping Consortium
  9. 9. 1. machine learning is coming for research…
  10. 10. a different approach to hypothesis formation…
  11. 11. requires sample scale, longitudinally…
  12. 12. To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
  13. 13. 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
  14. 14. 689,003 people
  15. 15. from 1800 to 100,000
  16. 16. 2. how can we increase informedness in mobile or digital consent?
  17. 17. (not informed consent)
  18. 18. comprehension language time format regulatory liability
  19. 19. 1. series of interviews and requirements gathering 2. interaction design process and prototyping 3. consent development
  20. 20. gait balance voice tapping
  21. 21. 1. tiered information access by participants 2. “pictorial” dominant on first information tier 3. text dominant on second information tier 4. require perfect score on short assessment
  22. 22. initial metaphor
  23. 23. 28
  24. 24. mPower (Parkinsons Disease) Share the Journey (Breast Cancer Survivor)
  25. 25. 30
  26. 26. 31
  27. 27. changeable by participant
  28. 28. >70,000 enrolled since 9 March (~75% choose to share broadly)
  29. 29. “participant centric consent toolkit” http://sagebase.org/pcc
  30. 30. iconographic representations of key concepts in informed consent open source methods
  31. 31. design layouts
  32. 32. workflows
  33. 33. web templates and assets
  34. 34. 3. implications for practitioners
  35. 35. is a design illuminating, or obscuring? drawing eyes to second cheapest ticket
  36. 36. how to reconcile tech culture and clinical research?
  37. 37. where’s the line between hope and hype?
  38. 38. where’s the line between patient engagement and targeting?
  39. 39. thank you http://sagebase.org/ @sagebio @wilbanks

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