Presentation given to the Fred Hutchinson Cancer Research Center Data Science Affinity Group

1. brian m. bot | principal scientist |
2016 feb 01
sage bionetworks
hutch data science affinity group
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. Wisdom'of'the'crowd'
Ci0zen'engagement'
Data'sharing'
Open'
Collabora0ve'
Research'
Gamifica0on'
Community'Development'
Consor0a'/'Federa0on'
sage bionetworks

4. Healthmobile

5. Healthm

6. move beyond insular health tracking

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

9. >75%

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

12. the beginnings of an open ecosystem in mHealth

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

17. participant
centered
consent

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

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

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

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
participant-centered consent

22. participant-centered consent

23. participant-centered consent

24. participant-centered consent

25. radical honesty > radical restrictions

26. changeable by participant

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

28. 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

29. ~75k participants across all studies
>70% opted to share broadly

30. 30
mPower

31. 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

32. 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

33. 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

34. Motor
Initiation
Gait/Balance Hypophonia Memory
mPower activities

35. Gait/Balance

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

37. Gait/Balance

38. Gait/Balance

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

45. Synapse - building communities of researchers

46. Synapse - building communities of researchers

47. Synapse - building communities of researchers

48. Synapse - building communities of researchers

49. Synapse - building communities of researchers

50. Synapse - building communities of researchers

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

52. 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

53. 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

54. 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”

55. “research parasites”
(oh my)

56. “research parasites”calling all
sage bionetworks

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