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@wilbanks

NFAIS “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
...
changes the market.
changes the market.
how do we do the same thing for
clinical trials?
We	focus	on	a	world	where	biomedical	research	is	about	to	
fundamentally	change.	We	think	it	will	be	often	conducted	in	
a...
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...
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,...
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)
27
59,700 downloads from app store

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

15,185 participants enrolled (92...
includes timing of medications
includes timing of medications
high-dimensional data
individual progression
62	y	old	Man 67	y	old	Woman
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)
comprehension

language

time

format

regulatory

liability
42
study “narrative”
changeable by participant
59,700 downloads from app store

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

15,185 participants enrolled (92...
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
scar...
thank you

http://sagebase.org/

@sagebio

@wilbanks
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
Competition from the Commons
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Competition from the Commons

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Plenary talk at the NFAIS/CENDI workshop on the Future of the Commons, November 18 2015, Washington DC USA

Published in: Health & Medicine
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Competition from the Commons

  1. 1. @wilbanks NFAIS “the future of the commons” 2015
  2. 2. 1. “competition from the commons” changes markets
  3. 3. 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
  4. 4. changes the market.
  5. 5. changes the market.
  6. 6. how do we do the same thing for clinical trials?
  7. 7. We focus on a world where biomedical research is about to fundamentally change. We think it will be often conducted in an open, collaborative way where teams of teams far beyond the current guilds of experts will contribute to making better, faster, relevant discoveries
  8. 8. what models do we have for a commons in a heavily regulated / SaaS world?
  9. 9. 2. the commons in clinical research…
  10. 10. “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…”
  11. 11. mobile brings prediction, massive sample sizes, machine learning.
  12. 12. (in the absence of intervention, it does not lead to a commons)
  13. 13. 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
  14. 14. To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
  15. 15. (the commons as a network effect of scale in consumer-land)
  16. 16. 3. a consented commons…
  17. 17. mPower (Parkinsons Disease)
  18. 18. 27
  19. 19. 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)
  20. 20. includes timing of medications
  21. 21. includes timing of medications
  22. 22. high-dimensional data
  23. 23. individual progression
  24. 24. 62 y old Man 67 y old Woman same medicine, different impacts
  25. 25. “loads and reliefs” affect the efficacy of medication
  26. 26. “scorecards” for individual disease features
  27. 27. 4. structural advantages of the commons in research data…
  28. 28. the right to combine and mine…
  29. 29. (not informed consent)
  30. 30. comprehension language time format
 regulatory liability
  31. 31. 42
  32. 32. study “narrative”
  33. 33. changeable by participant
  34. 34. 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
  35. 35. 78,000 enrolled across six studies since March 9 2015.
  36. 36. 78,000 enrolled across six studies since March 9 2015. the commons is the overwhelming choice of those enrolled.
  37. 37. identity test oath
  38. 38. get the data into a reusable environment by default
  39. 39. feed the data into other projects…
  40. 40. the commons as foundation for deep learning as a commodity…
  41. 41. for those who need lots of data users, fast…
  42. 42. the right to combine results and features…
  43. 43. so what?
  44. 44. how the market acts without disruption
  45. 45. what actions do we take to change the market through our commons?
  46. 46. 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.
  47. 47. thank you http://sagebase.org/ @sagebio @wilbanks

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