SlideShare a Scribd company logo
1 of 90
Download to read offline
three hypotheses.
hypothesis A:
cheap data changes the
 epistemology of fields.
what makes justified
 beliefs justified?


   http://plato.stanford.edu/entries/epistemology/
player x is a good hitter
        because
OPS = AB(H + BB +
HBP) + TB(AB + BB + SF
+ HBP) / AB(AB + BB +
SF + HBP)
fields based on narrative, but
  tested in reality, are very
  vulnerable to data-driven
           change.
information > gut
 models and metrics
low transaction costs
   pissed off pundits
hypothesis B:
data is (becoming) cheap
enough to drive epistemic
    change in health.
not just cheap, but
potentially democratized.
not just democratized, but
        ubiquitous.
hypothesis C:
costs will not magically
decline thanks to data.
25
26
27
28
29
assume 1,000,000 downloads
assume 10% false positive rate
     100,000 doctor visits
      $1000 per biopsy
that s the setup.
sharing by small but
coherent groups can
create asymmetrically
 valuable resources.
small group
  sharing
coherentism from:

 standard legal tools
common infrastructure
       norms
      metadata
proven to work in:
    software
     content
the experiment:
let s a small but
  coherent group to
share data and see if it
   works in health.
http://opensnp.org/users/615
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
Also there is no suggestion of
consanguinity in your pedigree.

http://www.ianlogan.co.uk/
http://sagebridge.org
53
PLC:
portable legal consent
terms in blue pop up definitions
all boxes must be checked




  volunteer must click to proceed
volunteer cannot skip video
http://weconsent.us/informed-
          consent/




                                64
moving PLC to an open
  consent standard.
email
              patient
             #XYZ123


researcher              patient
Public	
             Portable	
  Legal	
                          Sage	
  Bionetworks             Sage	
  Bionetworks
       Recruitment                Consent                                            CGRE                        Synapse
              Founda3on
               Advocacy	
  

                                                                            CGRE	
  Database               Synapse	
  Database


   1                           2         Portable	
  Legal	
  Consent   3                              4                          5

                                                                             Individual	
  Level	
            De-­‐iden3fied
                Hospital




                                                                                   Data                         Dataset
                                                                                                                                  Researchers
               Founda3on
                Advocacy	
  




Par3cipants
3
       Portable	
  Legal	
  Consent
                2
 Advocacy	
                            Advocacy	
  
Founda3on            Hospital         Founda3on




                                                      Par3cipants
                1
71
five clinical studies on
Bridge this year under
         PLC.
it s likely that we will
end up with a sharing
  monopoly of some
          sort.
once entrenched, hard to
         move.
once entrenched, hard to
         move.
tendency to increment.
a. just like now,
  but moreso
b. the cartel.
c. the commons.
only the last choice
  allows all three
 choices to exist.
thank you
         @wilbanks
john.wilbanks@sagebase.org

More Related Content

Similar to Let's Pool Our Medical Data

Ownership Rights:: Patents for Derivatives of the Human Body
Ownership Rights:: Patents for Derivatives of the Human Body Ownership Rights:: Patents for Derivatives of the Human Body
Ownership Rights:: Patents for Derivatives of the Human Body Larnita Pette
 
Obsolete and Emerging Technologies
Obsolete and Emerging TechnologiesObsolete and Emerging Technologies
Obsolete and Emerging TechnologiesMark G. Bearss
 
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)ARDC
 
Seattle-Denver VA Center for Innovation
Seattle-Denver VA Center for InnovationSeattle-Denver VA Center for Innovation
Seattle-Denver VA Center for InnovationBrian Bot
 
Slides for rare disorders meeting
Slides for rare disorders meetingSlides for rare disorders meeting
Slides for rare disorders meetingSean Ekins
 
Next generation sequencing in pharmacogenomics
Next generation sequencing in pharmacogenomicsNext generation sequencing in pharmacogenomics
Next generation sequencing in pharmacogenomicsDr. Gerry Higgins
 
Fore FAIR ISMB 2019
Fore FAIR ISMB 2019Fore FAIR ISMB 2019
Fore FAIR ISMB 2019Ian Fore
 
Trial x allscripts_submission
Trial x allscripts_submissionTrial x allscripts_submission
Trial x allscripts_submissionnycgwb
 
Will Biomedical Research Fundamentally Change in the Era of Big Data?
Will Biomedical Research Fundamentally Change in the Era of Big Data?Will Biomedical Research Fundamentally Change in the Era of Big Data?
Will Biomedical Research Fundamentally Change in the Era of Big Data?Philip Bourne
 
Life sciences big data use cases
Life sciences big data use casesLife sciences big data use cases
Life sciences big data use casesGuy Coates
 
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...DNA Compass
 
Trends in Annotation of Genomic Data
Trends in Annotation of Genomic DataTrends in Annotation of Genomic Data
Trends in Annotation of Genomic Databiobase
 
Reproducible method and benchmarking publishing for the data (and evidence) d...
Reproducible method and benchmarking publishing for the data (and evidence) d...Reproducible method and benchmarking publishing for the data (and evidence) d...
Reproducible method and benchmarking publishing for the data (and evidence) d...GigaScience, BGI Hong Kong
 
Indications discovery and drug repurposing
Indications discovery and drug repurposingIndications discovery and drug repurposing
Indications discovery and drug repurposingSean Ekins
 
Cheryl Gillet - The HTA and Biobanking
Cheryl Gillet - The HTA and BiobankingCheryl Gillet - The HTA and Biobanking
Cheryl Gillet - The HTA and Biobankingkclcompbio
 
Artificial Intelligence for Discovery
Artificial Intelligence for DiscoveryArtificial Intelligence for Discovery
Artificial Intelligence for DiscoveryDayOne
 

Similar to Let's Pool Our Medical Data (20)

Ownership Rights:: Patents for Derivatives of the Human Body
Ownership Rights:: Patents for Derivatives of the Human Body Ownership Rights:: Patents for Derivatives of the Human Body
Ownership Rights:: Patents for Derivatives of the Human Body
 
Obsolete and Emerging Technologies
Obsolete and Emerging TechnologiesObsolete and Emerging Technologies
Obsolete and Emerging Technologies
 
Blockchain in life sciences
Blockchain in life sciencesBlockchain in life sciences
Blockchain in life sciences
 
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)
Questions asked during 23 May webinar (Ethics, Legal issues and data sharing)
 
Seattle-Denver VA Center for Innovation
Seattle-Denver VA Center for InnovationSeattle-Denver VA Center for Innovation
Seattle-Denver VA Center for Innovation
 
Slides for rare disorders meeting
Slides for rare disorders meetingSlides for rare disorders meeting
Slides for rare disorders meeting
 
Next generation sequencing in pharmacogenomics
Next generation sequencing in pharmacogenomicsNext generation sequencing in pharmacogenomics
Next generation sequencing in pharmacogenomics
 
Medical Device Daily - April 8, 2013
Medical Device Daily - April 8, 2013Medical Device Daily - April 8, 2013
Medical Device Daily - April 8, 2013
 
Fore FAIR ISMB 2019
Fore FAIR ISMB 2019Fore FAIR ISMB 2019
Fore FAIR ISMB 2019
 
Trial x allscripts_submission
Trial x allscripts_submissionTrial x allscripts_submission
Trial x allscripts_submission
 
Will Biomedical Research Fundamentally Change in the Era of Big Data?
Will Biomedical Research Fundamentally Change in the Era of Big Data?Will Biomedical Research Fundamentally Change in the Era of Big Data?
Will Biomedical Research Fundamentally Change in the Era of Big Data?
 
Can scan final 2012 berkeley
Can scan final 2012 berkeleyCan scan final 2012 berkeley
Can scan final 2012 berkeley
 
Life sciences big data use cases
Life sciences big data use casesLife sciences big data use cases
Life sciences big data use cases
 
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...
Possible Solution for Managing the Worlds Personal Genetic Data - DNA Guide, ...
 
Essay On Cost Sharing
Essay On Cost SharingEssay On Cost Sharing
Essay On Cost Sharing
 
Trends in Annotation of Genomic Data
Trends in Annotation of Genomic DataTrends in Annotation of Genomic Data
Trends in Annotation of Genomic Data
 
Reproducible method and benchmarking publishing for the data (and evidence) d...
Reproducible method and benchmarking publishing for the data (and evidence) d...Reproducible method and benchmarking publishing for the data (and evidence) d...
Reproducible method and benchmarking publishing for the data (and evidence) d...
 
Indications discovery and drug repurposing
Indications discovery and drug repurposingIndications discovery and drug repurposing
Indications discovery and drug repurposing
 
Cheryl Gillet - The HTA and Biobanking
Cheryl Gillet - The HTA and BiobankingCheryl Gillet - The HTA and Biobanking
Cheryl Gillet - The HTA and Biobanking
 
Artificial Intelligence for Discovery
Artificial Intelligence for DiscoveryArtificial Intelligence for Discovery
Artificial Intelligence for Discovery
 

More from john wilbanks

Generic Visual Consent Template
Generic Visual Consent TemplateGeneric Visual Consent Template
Generic Visual Consent Templatejohn wilbanks
 
Sage Bionetworks consent overview - November 2017
Sage Bionetworks consent overview - November 2017Sage Bionetworks consent overview - November 2017
Sage Bionetworks consent overview - November 2017john wilbanks
 
PD app consent wireframe May 8 2014
PD app consent wireframe May 8 2014PD app consent wireframe May 8 2014
PD app consent wireframe May 8 2014john wilbanks
 
mPower consent screenshots
mPower consent screenshotsmPower consent screenshots
mPower consent screenshotsjohn wilbanks
 
Informed Consent in the Mobile World
Informed Consent in the Mobile WorldInformed Consent in the Mobile World
Informed Consent in the Mobile Worldjohn wilbanks
 
Participant-Centered Consent Toolkit Overview
Participant-Centered Consent Toolkit OverviewParticipant-Centered Consent Toolkit Overview
Participant-Centered Consent Toolkit Overviewjohn wilbanks
 
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...A New Model for Informed Consent - Participant Centered Consent - Broad Insti...
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...john wilbanks
 
A New Model for Informed Consent: The Impact of Open Science on the Responsib...
A New Model for Informed Consent: The Impact of Open Science on the Responsib...A New Model for Informed Consent: The Impact of Open Science on the Responsib...
A New Model for Informed Consent: The Impact of Open Science on the Responsib...john wilbanks
 
Electronic Data Methods Forum - Portable Consent 2.0
Electronic Data Methods Forum - Portable Consent 2.0Electronic Data Methods Forum - Portable Consent 2.0
Electronic Data Methods Forum - Portable Consent 2.0john wilbanks
 
Portable Informed Consent
Portable Informed ConsentPortable Informed Consent
Portable Informed Consentjohn wilbanks
 
Living well through data
Living well through data Living well through data
Living well through data john wilbanks
 
PLC User Upload Wireframes v1
PLC User Upload Wireframes v1PLC User Upload Wireframes v1
PLC User Upload Wireframes v1john wilbanks
 
Consenting to Research
Consenting to ResearchConsenting to Research
Consenting to Researchjohn wilbanks
 
Wireframe public oct 2011
Wireframe public oct 2011Wireframe public oct 2011
Wireframe public oct 2011john wilbanks
 
Consent to research
Consent to research  Consent to research
Consent to research john wilbanks
 
It's the Customer, Not the Container
It's the Customer, Not the ContainerIt's the Customer, Not the Container
It's the Customer, Not the Containerjohn wilbanks
 

More from john wilbanks (16)

Generic Visual Consent Template
Generic Visual Consent TemplateGeneric Visual Consent Template
Generic Visual Consent Template
 
Sage Bionetworks consent overview - November 2017
Sage Bionetworks consent overview - November 2017Sage Bionetworks consent overview - November 2017
Sage Bionetworks consent overview - November 2017
 
PD app consent wireframe May 8 2014
PD app consent wireframe May 8 2014PD app consent wireframe May 8 2014
PD app consent wireframe May 8 2014
 
mPower consent screenshots
mPower consent screenshotsmPower consent screenshots
mPower consent screenshots
 
Informed Consent in the Mobile World
Informed Consent in the Mobile WorldInformed Consent in the Mobile World
Informed Consent in the Mobile World
 
Participant-Centered Consent Toolkit Overview
Participant-Centered Consent Toolkit OverviewParticipant-Centered Consent Toolkit Overview
Participant-Centered Consent Toolkit Overview
 
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...A New Model for Informed Consent - Participant Centered Consent - Broad Insti...
A New Model for Informed Consent - Participant Centered Consent - Broad Insti...
 
A New Model for Informed Consent: The Impact of Open Science on the Responsib...
A New Model for Informed Consent: The Impact of Open Science on the Responsib...A New Model for Informed Consent: The Impact of Open Science on the Responsib...
A New Model for Informed Consent: The Impact of Open Science on the Responsib...
 
Electronic Data Methods Forum - Portable Consent 2.0
Electronic Data Methods Forum - Portable Consent 2.0Electronic Data Methods Forum - Portable Consent 2.0
Electronic Data Methods Forum - Portable Consent 2.0
 
Portable Informed Consent
Portable Informed ConsentPortable Informed Consent
Portable Informed Consent
 
Living well through data
Living well through data Living well through data
Living well through data
 
PLC User Upload Wireframes v1
PLC User Upload Wireframes v1PLC User Upload Wireframes v1
PLC User Upload Wireframes v1
 
Consenting to Research
Consenting to ResearchConsenting to Research
Consenting to Research
 
Wireframe public oct 2011
Wireframe public oct 2011Wireframe public oct 2011
Wireframe public oct 2011
 
Consent to research
Consent to research  Consent to research
Consent to research
 
It's the Customer, Not the Container
It's the Customer, Not the ContainerIt's the Customer, Not the Container
It's the Customer, Not the Container
 

Let's Pool Our Medical Data