seattle-denver va center for innovation

brian m. bot | principal scientist |

2016 april 08

sage bionetworks

va seattle-denver center of innovation

smartphones and surveys and sensors,oh my!

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 researchwill fundamentally change to be more open and collaborative

supports communities of researchers working collaboratively across disciplines

our approach

sage bionetworks

Wisdom'of'the'crowd'

Ci0zen'engagement'Data'sharing'

Open'Collabora0ve'Research'

Gamifica0on'

Community'Development'

Consor0a'/'Federa0on'

sage bionetworks

CRC Subtyping Consortium

DREAM ChallengesProgenitor Cell Biology Consortium

TCGA Pan-Cancer Consortium

CommonMind Consortium

PsychENCODE

Accelerating Medicines Partnership

Resilience Project

Influenza Vaccinations

Dengue FeverPsychosis Spectrum Disorder

Oncology Molecular ClassifiersNext Gen Scientific Publishing

Mozilla Science Labs

sage bionetworks


public / private partnership between NIH, 10 biopharmaceutical companies

and several non-profit organizations

http://www.nytimes.com/2014/02/05/health/nih-joins-drug-makers-and-nonprofits-on-stubborn-diseases.html





PsychENCODE


Resilience Project





sage bionetworks


18NPG papers

68core projects248

researchers

28institutions

1070datasets1723

results





PsychENCODE


Resilience Project





sage bionetworks

Wisdom'of'the'crowd'

Ci0zen'engagement'Data'sharing'

Open'Collabora0ve'Research'

Gamifica0on'

Community'Development'

Consor0a'/'Federa0on'

sage bionetworks

Healthmobile

Healthm

move beyond insular health tracking

move beyond insular health tracking

nearly 200 million smart phone users in US

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

the beginnings of an open ecosystem in mHealth

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

participant-centered consent

open source toolkitparticipant-centered consent

http://sagebase.org/pcc

http://sagebase.org/pcc


current consents:

written by a doctor reviewed by a lawyer edited by a committee


put the ‘informed’ back into informed consent

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


radical honesty > radical restrictions

changeable by participant

the beginnings of open ecosystem in mHealth

balance the security settings of the system with the desires of those being studied

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

~75k participants across all studies

>70% opted to share broadly

39

mPower

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

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

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

Motor Initiation Gait/Balance Hypophonia Memory

mPower activities

Gait/Balance

x

yz

userAcceleration

gravity

rotationRate

attitude

Gait/Balance

device motion readings at 100 hz

Gait/Balance

Gait/Balance

Monty Python's The Flying Circus

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

Parkinson mHealth research community

promote an ecosystem whereresearch is conductedfor 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.


……

There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research

parasites”

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”

“research parasites”

(oh my)

calling all

sage bionetworks

“research parasites”

brian m. bot———————— principal scientist community manager

[email protected] @BrianMBot

thank you

sage bionetworks

mailto:[email protected]