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

20

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

brian.bot@sagebase.org @BrianMBot

thank you

sage bionetworks