1.
brian m. bot | principal scientist |
the beginnings of an open ecosystem
in
2015 feb 4
sage bionetworks
mHealth
mozilla science labs meetup

2.
sage bionetworks
a non-profit organization focused on
a world where biomedical research
will fundamentally change to be
more open and collaborative
our approach

3.
>75%

4.
how to balance desire to share w/
importance of privacy?

5.
participant
centered
consent

6.
participant-centered consent
current consents:
written by a doctor
reviewed by a lawyer
edited by a committee

7.
participant-centered consent
put the ‘informed’ back into informed consent

8.
participant-centered consent

9.
radical honesty > radical restrictions

10.
changeable by participant

11.
the beginnings of open ecosystem in mHealth
balance the security settings of
the system with the desires of
those being studied

12.
~75k participants across all studies
>70% opted to share broadly

13.
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

14.
Motor
Initiation
Gait/Balance Hypophonia Memory
mPower activities

15.
Synapse - building communities of researchers

16.
Synapse - building communities of researchers

17.
promote an ecosystem where
research is conducted
for others to consume

18.
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 where
research is conducted
for others to consume

19.
promote an ecosystem where
research is conducted
for 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”

20.
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 where
research is conducted
for others to consume

21.
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”

22.
“research parasites”

23.
“research parasites”calling all
sage bionetworks

24.
brian m. bot
————————
principal scientist
community manager
brian.bot@sagebase.org
@BrianMBot
thank you
sage bionetworks