smartphones and surveys and sensors, oh my!

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

7. 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

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

9. 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

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

18. >75%

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

21. the beginnings of an open ecosystem in mHealth

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

26. participant-centered consent

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

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

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

30. 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

31. participant-centered consent

32. participant-centered consent

33. participant-centered consent

34. radical honesty > radical restrictions

35. changeable by participant

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

37. 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

38. ~75k participants across all studies
>70% opted to share broadly

39. 39
mPower

40. 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

41. 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

42. 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

43. Motor
Initiation
Gait/Balance Hypophonia Memory
mPower activities

44. Gait/Balance

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

46. Gait/Balance

47. Gait/Balance

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

54. 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

55. Parkinson mHealth research community

56. Parkinson mHealth research community

57. Parkinson mHealth research community

58. Parkinson mHealth research community

59. Parkinson mHealth research community

60. Parkinson mHealth research community

61. Parkinson mHealth research community

62. Parkinson mHealth research community

63. Parkinson mHealth research community

64. Parkinson mHealth research community

65. Parkinson mHealth research community

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

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

68. 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.

69. 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”

70. 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”

71. “research parasites”
(oh my)

72. calling all
sage bionetworks
“research parasites”

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