Mozilla Science Labs Berlin Meetup
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brian m. bot | principal scientist | the beginnings of an open ecosystem in 2015 feb 4 sage bionetworks mHealth mozilla science labs meetup
Transcript of Mozilla Science Labs Berlin Meetup
brian m. bot | principal scientist |
the beginnings of an open ecosystem in
2015 feb 4
sage bionetworks
mHealth
mozilla science labs meetup
sage bionetworks
a non-profit organization focused on a world where biomedical research
will fundamentally change to be more open and collaborative
our approach
>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
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
Motor Initiation Gait/Balance Hypophonia Memory
mPower activities
Synapse - building communities of researchers
Synapse - building communities of researchers
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
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”
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”“research parasites”
“research parasites”
“research parasites”calling all
sage bionetworks
brian m. bot———————— principal scientist community manager
[email protected] @BrianMBot
thank you
sage bionetworks
