open competition for mobile health studies

“being there”

how open competition makes mobile health research better

@wilbanksdefrag 2015

1.

“competition from the open”changes markets

The freedom to run the program as you wish, for any purpose (freedom 0).

The freedom to study how the program works, and change it so it does your computing as you wish (freedom 1).

The freedom to redistribute copies so you can help your neighbor (freedom 2).

The freedom to distribute copies of your modified versions to others (freedom 3).

from http://www.gnu.org/philosophy/free-sw.en.html, available to public under CC BY-ND 4.0

changes how the rest of the market treats its users…and developers.

changes how the rest of the market treats its readers…and developers.

how do we do the same thing for clinical trials?

Wefocusonaworldwherebiomedicalresearchisabouttofundamentallychange.Wethinkitwillbeoftenconductedinanopen,collaborativewaywhereteamsofteamsfarbeyondthecurrentguildsofexpertswillcontributetomakingbetter,faster,relevantdiscoveries

what’s it mean to be “non profit, open source” in heavily regulated / SaaS world?

2.

“full stack” open clinical studies

“Investigators will meet annually in-person with each participant to assess and record progression … every six months, the team

will conduct phone and mail surveys regarding diagnosis, medications, and

other impacts of the disease…”

mobile brings prediction, massive sample sizes, machine learning.

To predict whether or not we’ll click on ads, Facebook / Amazon / Google have longitudinal data on individuals.

where i’ve been, where i’m going

To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.

mPower (Parkinsons Disease)

21

59,700 downloads from app store

16,585 participants consented (28% of total downloaded)

15,185 participants enrolled (92% of all consented)

17% of participants who completed enrollment survey indicate a diagnosis of Parkinson disease (1501/8715)

includes timing of medications

includes timing of medications

high-dimensional data

individual progression

62yoldMan 67yoldWoman

same medicine, different impacts

“loads and reliefs” affect the efficacy of medication

“scorecards” for individual disease features

3.

the real payoff: recombinant data

the right to combine and mine…

(not informed consent)

comprehensionlanguagetimeformat

regulatoryliability

36

study “narrative”

navigation to/from reinforces concept

changeable by participant

59,700 downloads from app store

16,585 participants consented (28% of total downloaded)

15,185 participants enrolled (92% of all consented)

17% of participants who completed enrollment survey indicate a diagnosis of Parkinson disease (1501/8715)

78% share their data worldwide

identity test

oath

get the data into a reusable environment by default

feed the data into other projects…

constantly ask: how to enable deep learning?

for those who need lots of data users, fast…

so what?

how the market acts without disruption

what’s it mean to be “non profit, open source” in heavily regulated / SaaS world?

1.make the data a public good.

2.commoditize the service costs.

3.disrupt in a way that empowers patients and developers.

thank you

http://sagebase.org/

@sagebio

@wilbanks