Seattle-Denver VA Center for Innovation

1. brian m. bot | principal scientist | 2016 april 08 sage bionetworks va seattle-denver center of innovation smartphones and surveys and sensors, oh my!

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. sage bionetworks

4. Wisdom'of'the'crowd' Ci0zen'engagement' Data'sharing' Open' Collabora0ve' Research' Gamiﬁca0on' Community'Development' Consor0a'/'Federa0on' sage bionetworks

5. CRC Subtyping Consortium DREAM Challenges Progenitor Cell Biology Consortium TCGA Pan-Cancer Consortium CommonMind Consortium PsychENCODE Accelerating Medicines Partnership Resilience Project Influenza Vaccinations Dengue Fever Psychosis Spectrum Disorder Oncology Molecular Classifiers Next Gen Scientific Publishing Mozilla Science Labs sage bionetworks

6. Accelerating Medicines Partnership public / private partnership between NIH, 10 biopharmaceutical companies and several non-proﬁt organizations

8. TCGA Pan-Cancer Consortium 18NPG papers 68core projects 248researchers 28institutions 1070datasets 1723results

10. CRC Subtyping Consortium

11. CRC Subtyping Consortium

12. Wisdom'of'the'crowd' Ci0zen'engagement' Data'sharing' Open' Collabora0ve' Research' Gamiﬁca0on' Community'Development' Consor0a'/'Federa0on' sage bionetworks

13. Healthmobile

14. Healthm

15. move beyond insular health tracking

16. move beyond insular health tracking nearly 200 million smart phone users in US

17. >75%

18. how to balance desire to share w/ importance of privacy?

19. the beginnings of an open ecosystem in mHealth

20. stephen friend - president and cofounder, sage bionetworkseric schadt - cofounder and board member, sage bionetworks

21. participant-centered consent

22. open source toolkit participant-centered consent http://sagebase.org/pcc

23. participant-centered consent current consents: written by a doctor reviewed by a lawyer edited by a committee

24. participant-centered consent put the ‘informed’ back into informed consent

25. 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

29. radical honesty > radical restrictions

30. changeable by participant

31. the beginnings of open ecosystem in mHealth balance the security settings of the system with the desires of those being studied

32. 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

33. ~75k participants across all studies >70% opted to share broadly

34. 39 mPower

35. 40 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

36. 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

37. 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

38. Motor Initiation Gait/Balance Hypophonia Memory mPower activities

39. Gait/Balance

40. x y z userAcceleration gravity rotationRate attitude Gait/Balance device motion readings at 100 hz

41. Gait/Balance

42. Gait/Balance

43. Gait/Balance Monty Python's The Flying Circus

44. mPower six month data release 9,520 unique participants 8,320 completed at least one task 198,639 total activities and surveys completed 1,087 self reported parkinson diagnosis

45. Parkinson mHealth research community

56. promote an ecosystem where research is conducted for others to consume

57. promote an ecosystem where research is conducted for others to consume … … …

58. promote an ecosystem where research is conducted for others to consume … 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.

59. promote an ecosystem where research is conducted for others to consume … … There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites”

60. 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”

61. “research parasites” (oh my)

62. calling all sage bionetworks “research parasites”

63. brian m. bot ———————— principal scientist community manager brian.bot@sagebase.org @BrianMBot thank you sage bionetworks

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