The document discusses decentralization in biomedical research through pilot approaches and infrastructure that provide reusable solutions. It highlights several research communities and challenges that operate under principles of open science, network science, and participant-centered science. Lessons learned include the importance of community building and ensuring data sharing has a purpose. The goal is to bridge traditional research and digital ecosystems by going directly to participants and promoting an open research model.

1. brian m. bot | principal scientist |
2017 apr 30
sage bionetworks
creative commons global summit
in an increasingly ed
| @BrianMBot
biomedical research ecosystem
supporting communities:
decentraliz

2. ation
the process of redistributing or dispersing
functions, powers, people, or things away
from a central location or authority
wikipedia
decentraliz

3. pervasiveness of networked information
cloud infrastructure
democratization of research process
funders and public pushing for > sharing
in biomedical researchationdecentraliz

4. recruitment
data generation
data analysis
institutional silos

5. recruitment data generation data analysis
institutional silosbreaking down

6. pilot approaches
to create open systems, incentives, and norms
network
science
open
science
participant
centered
science
decentralization sage bionetworks
Pilot Systems and Approaches

7. build infrastructure
that provides robust, reusable solutions
Pilot Systems and Approaches
Infrastructure
network
science
open
science
participant
centered
science
decentralization sage bionetworks

8. decentralization sage bionetworks
Pilot Systems and Approaches
Infrastructure
network
science
open
science
participant
centered
science
support a
that operate under these principles
research communities

9. ras-ness
repository project
type 2 diabetes
ctcap
research communities

10. tcga pancan
common mind
ras-ness
breast cancer challenge
multiD

11. tcga pancan
common mind
ras-ness
crcsc
psych encode
amp ad
breast cancer challenge
alzheimer's challenge
digital mamography
oncology
neuroscience
challenges

12. tcga pancan
common mind
ras-ness
crcsc
psych encode
amp ad
breast cancer challenge
alzheimer's challenge
digital mamography
oncology
neuroscience
challenges

13. tcga pancan
common mind
ras-ness
crcsc
oncology
psych encode
amp ad
neuroscience
breast cancer challenge
alzheimer's challenge
digital mamography
mPower
mole mapper
mHealth
challenges

14. our approach
open: as a guiding principle, but not
a dogmatic position
cloud: as our native solution, but not
the only option

15. bridge the divide between traditional biomedical research
and a fully digital and networked ecosystem
biomedical research deeply rooted in
it’s practice

16. lessons learned
community building

17. don’t share for the sake of sharing
necessary, but not sufficient

18. analytical challenges

19. analytical challenges
unbiased, consistent, and rigorous method assessment
sampling of a space of diverse methods

20. analytical challenges

21. be mindful of when open is appropriate
unintended consequences

23. identify your end goal
align incentives to get you there

24. crc subtyping consortium

25. A
B
C
D
E
F
1
2
3
4
5
6
expert team data subtype
crc subtyping consortium

26. A
B
C
D
E
F
1
2
3
4
5
6
...
expert team data subtype
crc subtyping consortium

27. crc subtyping consortium

28. doi:10.1038/nm.3967
crc subtyping consortium

29. go directly to the participants
a new model of research

30. Healthmobile

31. Healthm

32. insular health trackingmove beyond

33. > 200 million smart phone users in US
insular health trackingmove beyond

35. >75%

37. 2015 march

38. march 2015 launch partner
5 initial apps
2 sage led
all 5 supported by sage technologies
60,000 participants in 1 month

39. >70% opted to share broadly

40. recruitment
mPower

41. mPower activities
motor
initiation
gait/balance hypophonia memory

42. x
y
z
userAcceleration
gravity
rotationRate
attitude
device motion readings at 100 hz
gait / balance

44. Monty Python's The Flying Circus

49. data releasemPower six month
promote an ecosystem
where research is conducted
for others to consume
9,520 unique participants
8,320 completed at least one task
198,639 total activities and surveys completed
1,087 self reported parkinson diagnosis

50. mPower six month data release
task name
type of task and
schedule
unique
participants
unique tasks
demographics survey - once 6,805 6,805
MDS-UPDRS survey - monthly 2,024 2,305
PDQ8 survey - monthly 1,334 1,641
memory activity - t.i.d. 968 8,569
tapping activity - t.i.d. 8,003 78,887
voice activity - t.i.d. 5,826 65,022
walking activity - t.i.d. 3,101 35,410

51. Parkinson’s Disease Foundation
Eli Lilly
AstraZeneca
Apple
Verily
Intel
Infocepts
Posit Science
MIT
The Ohio State University
University of Otago
University of Texas Health Science Center
Istanbul Sehir University
University of Iowa
University of Virginia
University of Toronto
Johns Hopkins University
Vanderbilt University
University of Rochester
McGill University
Xi'an Jiaotong University
University of Washington
Harvard University
mHealth research communityParkinson
study data released before any primary publication
100+ independent ‘qualified researchers’
working towards building a PD research community

52. mHealth research communityParkinson

54. funders pushing for greater transparency and return on
their investment
technology development moves fast, upends traditional
models of research
regulatory aspects have lagged and are rooted in ‘old’
system
social aspects are often largest barriers and move at a
glacial pace
increasingly decentralized research ecosystem

55. our approach
open: as a guiding principle, but not
a dogmatic conviction
cloud: as our native solution, but not
the only option

56. the disrupts the ecosystem
source (code) no longer enough
(users used to download tool to run locally)
open
cloud

57. (now users interact directly with software / platforms as services)
*** as a service
(users expect it to work 24 hrs a day)
the disrupts the ecosystemcloud
(and on every device)
(stacks of platforms built on top of one another)

58. the system is buffered to resist change
important to strategically push where
you can effect constructive change

59. …
increasingly decentralized research ecosystem ?

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”
increasingly decentralized research ecosystem ?

61. There is concern among some
front-line researchers that the
system will be taken over by
what some researchers have
characterized as “research
parasites”
increasingly decentralized research ecosystem ?

62. we all operate in the existing ecosystem
and are, therefore,
complicit in the change or lack thereof
the system is buffered to resist change

63. brian m. bot
————————
principal scientist
sage bionetworks
brian.bot@sagebase.org
@BrianMBot
thank you!
team sage
researchers
analysts
data scientists
designers
software engineers
governance experts
community managers
dreamers
sagebase.org/careers