Successfully reported this slideshow.
Your SlideShare is downloading. ×

smartphones and surveys and sensors, oh my!

Ad
Ad
Ad
Ad
Ad
Ad
Ad
Ad
Ad
Ad
Loading in …3
×

Check these out next

1 of 57 Ad
Advertisement

More Related Content

Slideshows for you (20)

Similar to smartphones and surveys and sensors, oh my! (20)

Advertisement
Advertisement

Recently uploaded (20)

smartphones and surveys and sensors, oh my!

  1. 1. brian m. bot | principal scientist | 2016 feb 01 sage bionetworks hutch data science affinity group smartphones and surveys and sensors, oh my!
  2. 2. sage bionetworks a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons focused on a world where biomedical research will fundamentally change to be more open and collaborative supports communities of researchers working collaboratively across disciplines our approach
  3. 3. Wisdom'of'the'crowd' Ci0zen'engagement' Data'sharing' Open' Collabora0ve' Research' Gamifica0on' Community'Development' Consor0a'/'Federa0on' sage bionetworks
  4. 4. Healthmobile
  5. 5. Healthm
  6. 6. move beyond insular health tracking
  7. 7. move beyond insular health tracking nearly 200 million smart phone users in US
  8. 8. >75%
  9. 9. how to balance desire to share w/ importance of privacy?
  10. 10. the beginnings of an open ecosystem in mHealth
  11. 11. stephen friend - president and cofounder, sage bionetworkseric schadt - cofounder and board member, sage bionetworks
  12. 12. participant centered consent
  13. 13. open source toolkit participant-centered consent http://sagebase.org/pcc
  14. 14. participant-centered consent current consents: written by a doctor reviewed by a lawyer edited by a committee
  15. 15. participant-centered consent put the ‘informed’ back into informed consent
  16. 16. 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 participant-centered consent
  17. 17. participant-centered consent
  18. 18. participant-centered consent
  19. 19. participant-centered consent
  20. 20. radical honesty > radical restrictions
  21. 21. changeable by participant
  22. 22. the beginnings of open ecosystem in mHealth balance the security settings of the system with the desires of those being studied
  23. 23. the beginnings of open ecosystem in mHealth ‘qualified researcher’ first pass 1. register for a synapse account 2. get a validated user profile 3. become a certified synapse user 4. submit an intended data use statement 5. agree to the data-specific conditions for use 6. download the data
  24. 24. ~75k participants across all studies >70% opted to share broadly
  25. 25. 30 mPower
  26. 26. 31 48,104 downloads from app store - first six months 16,585 participants consented 14,684 participants enrolled 9,520 agreed to ‘share broadly’ 1,087 self reported a professional diagnosis of Parkinson mPower
  27. 27. Standard Structured Activities Passive Measures • High Friction (long, infrequent) • Validated in large cohorts • Basis for most publications • Mild Friction (more frequent) • Minimal validation • Minimal Friction • Not validated mPower
  28. 28. Passive Measures GPS - Displacement Vectors GPS - Displacement Vectors - - Structured Activities Tapping Activity Walking/ Standing Activity Voice Activity Memory Game Surveys MDS-UPDRS PDQ8 MDS-UPDRS PDQ8 MDS-UPDRS PDQ8 MDS-UPDRS PDQ8 four symptoms of PD Motor Initiation Gait/Balance Hypophonia Memory
  29. 29. Motor Initiation Gait/Balance Hypophonia Memory mPower activities
  30. 30. Gait/Balance
  31. 31. x y z userAcceleration gravity rotationRate attitude Gait/Balance device motion readings at 100 hz
  32. 32. Gait/Balance
  33. 33. Gait/Balance
  34. 34. Gait/Balance Monty Python's The Flying Circus
  35. 35. Synapse - building communities of researchers
  36. 36. Synapse - building communities of researchers
  37. 37. Synapse - building communities of researchers
  38. 38. Synapse - building communities of researchers
  39. 39. Synapse - building communities of researchers
  40. 40. Synapse - building communities of researchers
  41. 41. promote an ecosystem where research is conducted for others to consume
  42. 42. A second concern held by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. promote an ecosystem where research is conducted for others to consume
  43. 43. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites” promote an ecosystem where research is conducted for others to consume
  44. 44. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites”“research parasites”
  45. 45. “research parasites” (oh my)
  46. 46. “research parasites”calling all sage bionetworks
  47. 47. brian m. bot ———————— principal scientist community manager brian.bot@sagebase.org @BrianMBot thank you sage bionetworks

×