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

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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The Role of the Research Commons in Clinical Research The Role of the Research Commons in Clinical Research Presentation Transcript

  • 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/6354182139/
  • 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