1. choose yourmonopolies wisely.
monopoly andincrementalism.
monopoly and network      effects.
once entrenched, hard to         move.
http://www.health2news.com/2012/11/08/ucsf-medical-center-ceo-explains-why-epic/
2. the rise of theopen monopoly.
any internet you want...
unintended side effect: massive increase in   sample size of   programmers
share-ers
emergence of the digital commons
no single entity maintains control       over the resource
intended effect:massive increase in  sample size of photographers
share-ers
http://www.flickr.com/photos/kalexanderson/6354182139/                      http://www.flickr.com/photos/kalexanderson/635...
all resting on astandard , open infrastructure
3. our monopolychoices in biomedical      research.
a. just like now,  but moreso
b. small matrix of    companies
c. open network
requires near-simultaneous creation of complex infrastructure.
storage, provenance, version control
http://synapse.sagebase.org
informed consent
http://weconsent.us
incentives and community
41
4. essentialcomponents.
changed roles
http://sagebridge.org
45
empowered patients
increase the sample    size through     technology
49
assume 1,000,000 downloadsassume 10% false positive rate     100,000 doctor visits      $1000 per biopsy
19 of 20 times, you didn’t need to go.
acceptance of reality
citizen driven improvement:     photos of moles    digital pathologies     health outcomes     better classifiers
and then we give it back for free        to all the apps.
if we make the sample  size large enough...
and we choose ourmonopolies wisely...
share-ers
thank you
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
The Role of the Research Commons in Clinical Research
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The Role of the Research Commons in Clinical Research

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Slides for keynote at The Role of the Research Commons in Clinical Research, http://ctsi.ucsf.edu/calendar/about-ctsi/special-event-role-research-commons-clinical-research

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  • That’s what I do. I am building a system, with the non profit Sage Bionetworks, that makes it easy for those willing to make the gift of data to do so, with full informed consent. It has no silos, just connections. We build on the power of informed consent, but we turn it around to make the data clearly open to research – an inversion of the traditional approach. We make a signal to the world – come look in our data, you need ask no more permission. We understand the risks, the risk that we might be identified in the streams of raw data, that harms we don’t yet know may come to us. We think the benefits, to us, to society, are worth it. We are doing our best to remember the design lessons of the internet, of wikipedia, of the web. Of systems that have not only scaled, but radically changed the world.\n
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  • Transcript of "The Role of the Research Commons in Clinical Research"

    1. 1. 1. choose yourmonopolies wisely.
    2. 2. monopoly andincrementalism.
    3. 3. monopoly and network effects.
    4. 4. once entrenched, hard to move.
    5. 5. http://www.health2news.com/2012/11/08/ucsf-medical-center-ceo-explains-why-epic/
    6. 6. 2. the rise of theopen monopoly.
    7. 7. any internet you want...
    8. 8. unintended side effect: massive increase in sample size of programmers
    9. 9. share-ers
    10. 10. emergence of the digital commons
    11. 11. no single entity maintains control over the resource
    12. 12. intended effect:massive increase in sample size of photographers
    13. 13. share-ers
    14. 14. http://www.flickr.com/photos/kalexanderson/6354182139/ http://www.flickr.com/photos/kalexanderson/6354182139/
    15. 15. all resting on astandard , open infrastructure
    16. 16. 3. our monopolychoices in biomedical research.
    17. 17. a. just like now, but moreso
    18. 18. b. small matrix of companies
    19. 19. c. open network
    20. 20. requires near-simultaneous creation of complex infrastructure.
    21. 21. storage, provenance, version control
    22. 22. http://synapse.sagebase.org
    23. 23. informed consent
    24. 24. http://weconsent.us
    25. 25. incentives and community
    26. 26. 41
    27. 27. 4. essentialcomponents.
    28. 28. changed roles
    29. 29. http://sagebridge.org
    30. 30. 45
    31. 31. empowered patients
    32. 32. increase the sample size through technology
    33. 33. 49
    34. 34. assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
    35. 35. 19 of 20 times, you didn’t need to go.
    36. 36. acceptance of reality
    37. 37. citizen driven improvement: photos of moles digital pathologies health outcomes better classifiers
    38. 38. and then we give it back for free to all the apps.
    39. 39. if we make the sample size large enough...
    40. 40. and we choose ourmonopolies wisely...
    41. 41. share-ers
    42. 42. thank you
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