• Share
  • Email
  • Embed
  • Like
  • Save
  • Private Content
Hitrd wilbanks may 2013
 

Hitrd wilbanks may 2013

on

  • 624 views

 

Statistics

Views

Total Views
624
Views on SlideShare
619
Embed Views
5

Actions

Likes
1
Downloads
0
Comments
0

1 Embed 5

https://twitter.com 5

Accessibility

Categories

Upload Details

Uploaded via as Adobe PDF

Usage Rights

CC Attribution-ShareAlike LicenseCC Attribution-ShareAlike License

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
    Processing…
Post Comment
Edit your comment

    Hitrd wilbanks may 2013 Hitrd wilbanks may 2013 Presentation Transcript

    • prelude:how to spend a billiondollars.
    • 2
    • 3
    • 4
    • 5
    • 6
    • assume 1,000,000 downloadsassume 10% false positive rate100,000 doctor visits$1000 per biopsy
    • 1. research v. “citizen”is bad for research.
    • "There is no reason anyonewould want a computer intheir home."Ken Olsen, founder of DigitalEquipment Corporation, 1977
    • 2010: <10,000
    • 15
    • research + “citizen”is good for research.
    • https://www.scienceexchange.com/
    • 2. integrating (most)patient data is (mostly)incoherent.
    • http://opensnp.org/users/615
    • http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
    • “Also there is no suggestion ofconsanguinity in your pedigree.”http://www.ianlogan.co.uk/
    • collaborations oncoherent data are provento create value.
    • 31
    • 32
    • 3. collaboration impliesnew forms of governance.
    • 35
    • Synapse  Data  Use  Condi4ons  Training• Link  on  Synapse  home  page
    • 37
    • PLC:“portable” legal consentpopulate the open layer.
    • terms in blue pop up definitions
    • volunteer must click to proceedall boxes must be checked
    • volunteer cannot skip video
    • ~600 enrolled~65% contributing
    • 46
    • 47
    • 48
    • 49
    • 4. building on theexperience.
    • http://sagebridge.org
    • 52
    • “modules” by class of data
    • interoperable “sandbox”consent
    • scalable economicincentives to behave.
    • moving PLC to an openconsent standard.
    • patientemailpatient#XYZ123researcher
    • Individual  Level  DataDe-­‐iden4fiedDatasetSage  BionetworksCGREPortable  Legal  Consent1 2 3 4 5Par4cipantsResearchersCGRE  Database Synapse  DatabaseAdvocacy  Founda4onHospitalAdvocacy  Founda4onPortable  Legal  ConsentPublic  RecruitmentSage  BionetworksSynapse
    • Portable  Legal  Consent1 2 3Par4cipantsAdvocacy  Founda4onHospitalAdvocacy  Founda4on
    • join the conversationjohn.wilbanks@sagebase.orgwilbanks@nitrd.gov