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

16

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

brian.bot@sagebase.org @BrianMBot

thank you

sage bionetworks