Agenda

• 2 week Review
  • Scott Littlewood
    • Meet and greet.
  • Governance ticket 6446
    • Updated graffle
    • Wishlist from Andy
    • Making docs actionable
• Next 2 week plan
  • "Secure Alias"

Notes

* Steering committee (Andy)
    * All on board
    * All tickets seem to match up
    * Simon has found all the materials that Andy would have forwarded.
* 2 week Review
    * Scott Littlewood
        * Meet and greet.
        * Andy: are you up-to-date from Simon? or first OMERO/HIC discussion?
        * Elwood: brief history from Simon
        * Andy: setting scene
            * Scottish informatics program
            * Working with longitudinal datasets for research/tertiary use
            * Pharmaco-diligence and -genetics
            * Computing problem and governance problem
            * Conflicting agendas; currently focusing on governance
            * see documents 6425 (project outline)
            * Pop up to HIC to see data (also on sample server)
    * Governance ticket 6446 at 14:15
        * Updated graffle
            * Andy: bang on in terms of how current system works from HIC perspective
            * Need to play with the XML, but what's drawn is correct.
        * Wishlist from Andy (6454)
            * Simon: If you want data presented in a particular way (in websilo) tell us
            * Jason: 6453, any guidance on 'pile of crap' v. 'gold'
                * Andy: Calidcott report is key
                * blueprint is draft, but will be defining the way forward
                * "releasing micro data: to follow"
                * Focus on: Audit trail
                * Automating the rest is novel.
        * Making docs actionable
            * Andy will pester Alison et al. for doc prioritization
            * Jason: any problem with list being public?
            * Andy: not a problem.
        * 6454
            * Jason: napkin drawings?
            * Andy: forwarded to Alison and Duncan
            * Off the top of Andy's head:
                * "what data source used by a researcher?"
                * "...via which project?"
                * "how many projects has subject X been in?"
            * Simon:
                * Great examples
                * gives us something to hold on
* Next 2 week plan
    * "Secure Alias"
        * "Show me which projects I've been used by."
        * But that won't be going in front of patients any time soon because of fears.
        * Instead, is someone trying to de-identify an individual
        * Another project: research register
            * "I'm interested in doing research"
            * "I want to opt out of drug studies"
            * "I want to study diabetes"
        * don't need uploadable dictionaries
        * there will be anonchi hash only (illegal to provide chi)
        * "data looks funny for some prochi?"
            * send anonchi to themselves on the NHS side.
        * audit trail: patients may get a business card with their anochi
            * opt out for being in research; hide them from all projects
        * Josh: imagine we have a long list (prioritized) we want to start checking off.
            * Andy: without any doubt...
            * What datasets have been used by which project?
            * Which projects used by Helen?
            * Gets into privacy impact assessment / proportional risk
        * things to flag
            * counts returned by any query is less than 5 (aggregates)
            * Andrew's example
                * new dataset owner
                * "I want to give you this data"
                * show me the data trail of usage
                * like an OLAP to cross-reference any of the dimensions
        * Need to produce another fake project from the same dataset
            * Elwood: identifiable when anonymized?
            * Andy: chi has date of birth
                * Person can have multiple chi
                * Create one number to link anochis without DOB
                * Postcode & date of birth can be presented
                    * depending on research proposal
                    * instead "age at extract" or "+/- 2G days" or "YOB"
                    * zone of postcode for economic index
                    * offset postcode.
                    * SIM rather than postcode
            * Andy: it's a fuzzy science
                * the fear is the more data you give the likelier it becomes
                * there's no real anonymization. call this "pseudo-anonymization"
                * people don't like sharing personal data
            * Andy: when creating a project extract, go to system and say, "is this safe?"
                * Proportional risk
            * Andy:
                * some systems are going for lock down
                * instead, be looser but blueprint includes heavy sanctions
                * block within 10 minutes.
            * Elwood: number of violations?
                * Andy: yes, prevent linkages between two projects
                * They will have the same data in both
                * but they should treat them separately.
        * Way forward (Josh)
            * Definitely get separate projects
            * Andy: about 10 projects active at one time.
            * Then just get something working
                * New data; "can you show us how safe it is"
                * SMR in audit table
                * Here are the projects
                * Here's what's been done with it
                * Here's what each researcher did (behaving?)
                * 3 dimensions: dataset / researcher / project
                    * abstract usually says "response of X after 2 years ..."
                    * GoDARTS was much bigger. "Questions about diabetes"
            * Possibly getting diagrams / graffles of possible workflow OK'd first.

• Actions
  • Andy: push steering on the documentation
  • Andy: put in vague questions for 6454
  • Andy: get more concrete questions for 6454 from Alison and Duncan
  • Andy: also 6454 questions from steering committee
  • Andy: add ... to steering committee agenda (from Jason)
  • Andy: create audit xmls for different projects
  • Simon: ticket "websilo: Violation report"
  • Simon: ticket creating of projects