Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

International Biobanking Symposium IV - on consent in mobile studies

1,055 views

Published on

Published in: Health & Medicine
  • Be the first to comment

International Biobanking Symposium IV - on consent in mobile studies

  1. 1. 1. personalized medicine means a probability culture.
  2. 2. “predictions are hard. especially about the future”
  3. 3. but predictions about me are increasingly accurate.
  4. 4. “it’s like they know me”
  5. 5. it’s like they know me
  6. 6. probability is going to be a way that we make personalized health happen.
  7. 7. requires a massive increase in sample size from today.
  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. 689,003 people
  10. 10. active patients feel the system is failing them, and are looking elsewhere.
  11. 11. “nothing about me without me!”
  12. 12. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  13. 13. 2. informed consent for studies at internet scale.
  14. 14. from 1800 to 100,000
  15. 15. 1. series of interviews and requirements gathering
 2. interaction design process and prototyping
 3. consent development
  16. 16. courtesy of: David Fore
  17. 17. gait balance voice tapping
  18. 18. 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
  19. 19. 34
  20. 20. 64,926 enrolled since 9 March (across 5 study apps using the method)
  21. 21. changeable by participant 70% choose to share broadly.
  22. 22. 3. it’s a method, not a product.
  23. 23. iconographic representations of key concepts in informed consent “nouns and verbs” http://sagebase.org/pcc
  24. 24. “sentences” “separating your identity from your data”
  25. 25. design layouts
  26. 26. workflows
  27. 27. web templates and assets
  28. 28. 2015 tasks: - multi-stakeholder data sharing process development - new modules for e-consent - connection with biobanks
  29. 29. consent isn’t standalone. it connects to ethics and governance structures inside data use - and back.
  30. 30. thank you http://sagebase.org/ @sagebio @wilbanks

×