competition from the commons
TRANSCRIPT
@wilbanksNFAIS “the future of the commons” 2015
1.
“competition from the commons”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 the market.
changes the market.
how do we do the same thing for clinical trials?
Wefocusonaworldwherebiomedicalresearchisabouttofundamentallychange.Wethinkitwillbeoftenconductedinanopen,collaborativewaywhereteamsofteamsfarbeyondthecurrentguildsofexpertswillcontributetomakingbetter,faster,relevantdiscoveries
what models do we have for a commons in a heavily
regulated / SaaS world?
2.
the commons in clinical research…
“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.
(in the absence of intervention, it does not lead to a commons)
To predict whether or not we’ll click on ads, Facebook / Amazon / Google have reams of longitudinal data.
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.
(the commons as a network effect of scale in consumer-land)
3.
a consented commons…
mPower (Parkinsons Disease)
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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
4.
structural advantages of the commons in research data…
the right to combine and mine…
(not informed consent)
comprehensionlanguagetimeformat
regulatoryliability
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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
78,000 enrolled across six studies since March 9 2015.
78,000 enrolled across six studies since March 9 2015.
the commons is the overwhelming choice of those enrolled.
identity test
oath
get the data into a reusable environment by default
feed the data into other projects…
the commons as foundation for deep learning as a commodity…
for those who need lots of data users, fast…
the right to combine results and features…
so what?
how the market acts without disruption
what actions do we take to change the market through our commons?
1. make the data a public good through consent and a “trust” based commons.
2. commoditize the services to eliminate scarcity, price discrimination.
3. cultivate many communities of practice on collective infrastructure.
