Lurie childrens wilbanks 2017

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  1. 1. Promote OPEN SYSTEMS, INCENTIVES, and NORMS to redefine how complex biological data is GATHERED, SHARED, AND USED.
  2. 2. 1. weird times for privacy and research.
  3. 3. my car knows i listen to my wifes playlist
  4. 4. whats benet? whats harm? how do we know?
  5. 5. whats benet? whats harm? how do we know?
  6. 6. what happens if we import toxic ethics from tech to health?
  7. 7. what happens if we import the commonsfrom tech to health?
  8. 8. 2. cloud and network science are tidal forces.
  9. 9. we see three pillars to modern scientic methods Open Science Team Science Participant centered Science
  10. 10. pilot approaches to create open systems, incentives, and norms Open Science Team Science Participant centered Science Pilot Systems and Approaches
  11. 11. build infrastructure to provide robust, reusable solutions Open Science Team Science Participant centered Science Pilot Systems and Approaches Infrastructure
  12. 12. Open Science Team Science Participant centered Science Pilot Systems and Approaches Infrastructure support research communities that operate under these principles
  13. 13. 3. the technology wave is building.
  14. 14. 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
  15. 15. high-dimensional data
  16. 16. 62yoldMan 67yoldWoman same medicine, dierent impacts
  17. 17. tapping number shows effects of medication and daily variation 50 75 100 125 150 date y
  18. 18. sharing personal thoughts on day-to-day changes
  19. 19. 4. issues and opportunities in e-consent
  20. 20. social pressures that increase rates of yes disappear
  21. 21. comprehensionlanguagetimeformat regulatoryliability
  22. 22. 1. technical debt means traditional (non-mobile) consent has known problems, but hard to change. 2. signs of support for new methods of using technology as pedagogy in consent This project was supported by 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 ocial views of the Agency of Healthcare Research and Quality. Additional funding came from the Robert Wood Johnson Foundation and the Helmsley Charitable Trust, and essential support from the Electronic Data Methods Forum at Academy Health.
  23. 23. 1. tiered information access by participants 2. pictorial dominant on rst information tier 3. text dominant on second information tier 4. require perfect score on short assessment
  24. 24. your clinical protocol is going to be clearly exposed.
  25. 25. initial metaphor
  26. 26. 38
  27. 27. screen structure
  28. 28. study narrative
  29. 29. summative / formative assessments of comprehension and informedness
  30. 30. changeable by participant
  31. 31. identity test data use statement
  32. 32. I WILL CREDIT PARTICIPANTS To complete this form: 1. Enter your name (see *) 2. Mark your initials on the line in the upper right corner of each box (9 times, total) 3. Sign and date I, _____________________*, rearm my commitment to the Synapse Awareness and Ethics Pledge. I will adhere to the following principles for responsible research: __________________________ * Printed name __________________________ Signature __________________________ Date I WILL NOTRE-IDENTIFY ___ I WILL NOTSHARE ___ I WILL NOT USE FOR ADVERTISING ___ I WILL KEEP SECURE ______ I WILL PUBLISH OPEN ACCESS ___ ___ I WILL PROTECTPRIVACY I WILL REPORTANY BREACHES ___ ___ I WILL FOLLOW THE LAW
  33. 33. participants and public get to see the users / uses.
  34. 34. iconographic representations of key concepts in informed consent open source methods
  35. 35. design layouts
  36. 36. workows
  37. 37. web templates and assets
  38. 38. 100,000+ enrolled in Sage-supported studies since March 2015 26 known studies using methods integrated into Apple ResearchKit
  39. 39. 5. where is this all going?
  40. 40. http://ascopubs.org/doi/abs/10.1200/JCO.2012.45.4553
  41. 41. RK approach + video
  42. 42. chat and video reformat visual content into a chat UI and let participants interact via Q&A possible to implement via SMS as well reformat visual content into longer form video
  43. 43. DNA sequencing and results return are dierent from sensors and surveys - have to teach and assess higher risk, uncertainty, unknowables Identiability Knowable harms Unknown unknowns
  44. 44. wacky ideas interaction required
  45. 45. the sorting hat Automatic sorting, no work required Consent process that could bin participants into likely risk and consent them in specic tracks Suggested for projects that involve consent of known sequences for which risk could be computed (i.e. at Broad etc) but interesting conceptually - what are the bins that could be used for sorting?
  46. 46. ballot box Manual selection and movement of choices Consent process where participant is faced with multiple statements and has to vote with them, with an interpretation of sorts provided at the end I.e. place seven statements on the screen about the study, let participant sort them into things that make me more / less likely to want to enroll I.e. ask seven binary questions about the study, display results with commentary i think i am unlikely to be a victim of genetic discrimination Suggested for projects where there isnt a lot of real estate (mobile) but also for where there isnt a lot of risk (perhaps not sharing broadly)
  47. 47. colossal cave adventure Interactive, quiz-based game where wrong answers receive immediate correction, has an endpoint / nish line Consent process where participant must nd their way through a moderately easy puzzle I.e. contextualize a risk such as long-term care insurance - before share genome should correctly choose i thought about long term care insurance Suggested for projects where there isnt a lot of real estate (mobile) but where there is medium risk (perhaps sharing broadly inside Sage style approaches)
  48. 48. kobayashi maru From Star Trek: The objective of the test is not for the cadet to outght or outplan the opponent but rather to force the cadet into a no-win situation and observe how he/she reacts. Consent process where participant must engage with ambiguity of DNA risk and benet through scripted situation(s) Put a set of unanswerable questions about the risks and benets of genome research use, donation and sharing together - but make sure there are no right answers.
  49. 49. please @ mejohn.wilbanks@sagebase.orghttp://sagebase.org/platforms/governance @wilbanks