open competition for mobile health studies

51
“being there” how open competition makes mobile health research better @wilbanks defrag 2015

Upload: john-wilbanks

Post on 11-Apr-2017

1.286 views

Category:

Health & Medicine


0 download

TRANSCRIPT

Page 1: Open Competition for Mobile Health Studies

“being there”

how open competition makes mobile health research better

@wilbanksdefrag 2015

Page 2: Open Competition for Mobile Health Studies
Page 3: Open Competition for Mobile Health Studies

1.

“competition from the open”changes markets

Page 4: Open Competition for Mobile Health Studies

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

Page 5: Open Competition for Mobile Health Studies

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

Page 6: Open Competition for Mobile Health Studies

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

Page 7: Open Competition for Mobile Health Studies

how do we do the same thing for clinical trials?

Page 8: Open Competition for Mobile Health Studies

Wefocusonaworldwherebiomedicalresearchisabouttofundamentallychange.Wethinkitwillbeoftenconductedinanopen,collaborativewaywhereteamsofteamsfarbeyondthecurrentguildsofexpertswillcontributetomakingbetter,faster,relevantdiscoveries

Page 9: Open Competition for Mobile Health Studies

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

Page 10: Open Competition for Mobile Health Studies

2.

“full stack” open clinical studies

Page 11: Open Competition for Mobile Health Studies
Page 12: Open Competition for Mobile Health 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…”

Page 13: Open Competition for Mobile Health Studies

mobile brings prediction, massive sample sizes, machine learning.

Page 14: Open Competition for Mobile Health Studies

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

Page 15: Open Competition for Mobile Health Studies

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

Page 16: Open Competition for Mobile Health Studies
Page 17: Open Competition for Mobile Health Studies
Page 18: Open Competition for Mobile Health Studies
Page 19: Open Competition for Mobile Health Studies
Page 20: Open Competition for Mobile Health Studies

mPower (Parkinsons Disease)

Page 21: Open Competition for Mobile Health Studies

21

Page 22: Open Competition for Mobile Health Studies

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)

Page 23: Open Competition for Mobile Health Studies

includes timing of medications

Page 24: Open Competition for Mobile Health Studies

includes timing of medications

Page 25: Open Competition for Mobile Health Studies

high-dimensional data

Page 26: Open Competition for Mobile Health Studies

individual progression

Page 27: Open Competition for Mobile Health Studies

62yoldMan 67yoldWoman

same medicine, different impacts

Page 28: Open Competition for Mobile Health Studies

“loads and reliefs” affect the efficacy of medication

Page 29: Open Competition for Mobile Health Studies

“scorecards” for individual disease features

Page 30: Open Competition for Mobile Health Studies

3.

the real payoff: recombinant data

Page 31: Open Competition for Mobile Health Studies

the right to combine and mine…

Page 32: Open Competition for Mobile Health Studies

(not informed consent)

Page 33: Open Competition for Mobile Health Studies

comprehensionlanguagetimeformat

regulatoryliability

Page 34: Open Competition for Mobile Health Studies
Page 35: Open Competition for Mobile Health Studies
Page 36: Open Competition for Mobile Health Studies

36

Page 37: Open Competition for Mobile Health Studies

study “narrative”

Page 38: Open Competition for Mobile Health Studies

navigation to/from reinforces concept

Page 39: Open Competition for Mobile Health Studies

changeable by participant

Page 40: Open Competition for Mobile Health Studies

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

Page 41: Open Competition for Mobile Health Studies

identity test

oath

Page 42: Open Competition for Mobile Health Studies

get the data into a reusable environment by default

Page 43: Open Competition for Mobile Health Studies

feed the data into other projects…

Page 44: Open Competition for Mobile Health Studies

constantly ask: how to enable deep learning?

Page 45: Open Competition for Mobile Health Studies

for those who need lots of data users, fast…

Page 46: Open Competition for Mobile Health Studies
Page 47: Open Competition for Mobile Health Studies

so what?

Page 48: Open Competition for Mobile Health Studies

how the market acts without disruption

Page 49: Open Competition for Mobile Health Studies

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

Page 50: Open Competition for Mobile Health Studies

1.make the data a public good.

2.commoditize the service costs.

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

Page 51: Open Competition for Mobile Health Studies

thank you

http://sagebase.org/

@sagebio

@wilbanks