Heart BD2K - mHealth
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brian m. bot | principal scientist | the beginnings of an open ecosystem in 2016 april 01 sage bionetworks mHealth heart bd2k
Transcript of Heart BD2K - mHealth
brian m. bot | principal scientist |
the beginnings of an open ecosystem in
2016 april 01
sage bionetworks
mHealth
heart bd2k
mHealth
mHealth
move beyond insular health tracking
move beyond insular health tracking
nearly 200 million smart phone users in US
>75%
how to balance desire to share w/ importance of privacy?
participantcenteredconsent
participant-centered consent
current consents:
written by a doctor reviewed by a lawyer edited by a committee
participant-centered consent
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
participant-centered consent
participant-centered consent
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
~75k participants across all studies
>70% opted to share broadly
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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
mPower data streams
Tapping Walking Voice Memory
mPower data streams
Task Metadata X X X XDevice Motion X XTouch Screen X XMicrophone X
Tapping Walking Voice Memory
mPower data streams
9,520 unique participants
8,320 completed at least one task
198,639 total activities and surveys completed
Parkinson mHealth research community
Parkinson mHealth research community
promote an ecosystem whereresearch is conductedfor others to consume
promote an ecosystem whereresearch is conductedfor others to consume
………
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.
promote an ecosystem whereresearch is conductedfor 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”
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”
calling all
sage bionetworks
“research parasites”
brian m. bot———————— principal scientist community manager
[email protected] @BrianMBot
thank you
sage bionetworks
