Scribd Logo
Hochladen

Willkommen bei Scribd!

  • Friday Lunchtime Lecture: Why Selling People's Medical/tax/school/ Records Isn't Open Data, by Phil Booth

    Hochgeladen von

    Open Data Institute
    466 Ansichten20 Seiten
    The care.data programme in the NHS came off the rails, despite – or possibly because – officials tried presenting it as an ‘open data’ initiative. It isn’t. But this conflation of ‘data sharing’ with open data is far from unique; from the National Pupil Database to your tax records and Cabinet Office’s resurrection of plans for mass sharing of citizen data that last surfaced in an obscure clause in the 2009 Coroners and Justice Bill, the government has designs on your data. With Phil Booth - former national coordinator of NO2ID, who now coordinates medConfidential, which campaigns to ensure every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Audio for this talk can be found here - https://soundcloud.com/theodi/friday-lunchtime-lecture-why-selling-peoples-medicaltaxschool-records-isnt-open-data

    Originaltitel

    Friday lunchtime lecture: Why selling people’s medical/tax/school/ records isn’t open data, by Phil Booth

    Copyright

    © Attribution ShareAlike (BY-SA)

    Verfügbare Formate

    PPTX, PDF, TXT oder online auf Scribd lesen

    Stufen Sie dieses Dokument als nützlich ein?

    Sind diese Inhalte unangemessen?

    Dieses Dokument melden
    The care.data programme in the NHS came off the rails, despite – or possibly because – officials tried presenting it as an ‘open data’ initiative. It isn’t. But this conflation of ‘data sharing’ with open data is far from unique; from the National Pupil Database to your tax records and Cabinet Office’s resurrection of plans for mass sharing of citizen data that last surfaced in an obscure clause in the 2009 Coroners and Justice Bill, the government has designs on your data. With Phil Booth - former national coordinator of NO2ID, who now coordinates medConfidential, which campaigns to ensure every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Audio for this talk can be found here - https://soundcloud.com/theodi/friday-lunchtime-lecture-why-selling-peoples-medicaltaxschool-records-isnt-open-data

    Copyright:

    Attribution ShareAlike (BY-SA)
    Als PPTX, PDF, TXT herunterladen oder online auf Scribd lesen
    Markieren Sie unangemessene Inhalte
    466 Ansichten20 Seiten

    Friday Lunchtime Lecture: Why Selling People's Medical/tax/school/ Records Isn't Open Data, by Phil Booth

    Hochgeladen von

    Open Data Institute
    The care.data programme in the NHS came off the rails, despite – or possibly because – officials tried presenting it as an ‘open data’ initiative. It isn’t. But this conflation of ‘data sharing’ with open data is far from unique; from the National Pupil Database to your tax records and Cabinet Office’s resurrection of plans for mass sharing of citizen data that last surfaced in an obscure clause in the 2009 Coroners and Justice Bill, the government has designs on your data. With Phil Booth - former national coordinator of NO2ID, who now coordinates medConfidential, which campaigns to ensure every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Audio for this talk can be found here - https://soundcloud.com/theodi/friday-lunchtime-lecture-why-selling-peoples-medicaltaxschool-records-isnt-open-data

    Copyright:

    Attribution ShareAlike (BY-SA)
    Als PPTX, PDF, TXT herunterladen oder online auf Scribd lesen
    Markieren Sie unangemessene Inhalte
    von 20

    Why selling peoples medical / tax /

    school /
    [ fill in as inappropriate]
    records
    isnt Open Data
    ODI lunchtime lecture, 6 June 2014
    personal data open data
    NPD request and data flows
    TIER 4
    Individual pupil level:
    identifiable, e.g. gender,
    attainment, absences
    TIER 3
    Aggregate school level:
    identifiable and sensitive, could
    have single counts
    TIER 2
    Individual pupil level: identifiable
    and sensitive, e.g. recoded
    ethnicity, SEN, FSM
    TIER 1
    Individual pupil level: identifying
    and/or identifiable and highly
    sensitive
    DfE Data
    and Statistics
    Division
    (DSD)
    DfE Data
    Management
    Advisory Panel
    (DMAP)
    Diagram based on NPD user guide and protocol, July 2012
    REQUEST
    DATA
    obfuscation vs. consent

    (notification knowledge)

    anonymisation vs. utility
    Not the only sort of
    stupid going on...

    (Clause 152 revisited)
    Cabinet Office transparency data sharing:
    Improving research and statistics
    Fraud, debt and error!
    Tailoring of public services
    GPES-Q
    GPET-E
    HSCA s259
    requires
    care.data
    Patient-level Identifiable Data (PID)
    including NHS number, postcode,
    DoB, gender & ethnicity
    HSCIC
    Your GP
    NHS
    England
    The Commissioning
    Board
    GPES IAG
    Independent
    Advisory Group
    HSCA
    s254
    directs
    data linkage,
    pseudonymisation,
    passing on & sale
    DAAG
    Data Access
    Advisory Group
    CAG
    Confidentiality
    Advisory Group
    CES
    GPET-Q
    aggregate statistics,
    Open Data
    Section 251 approval
    CPRD
    Clinical Practice
    Research Datalink
    PID
    including
    free text
    45 Insert the following new Clause

    The Health and Social Care Information Centre: restrictions on
    dissemination of information

    (1) Chapter 2 of Part 9 of the Health and Social Care Act 2012 (the Health
    and Social Care Information Centre) is amended as follows.
    (2) In section 253(1) (general duties), after paragraph (c) (but before the
    and after it) insert
    (ca) the need to respect and promote the privacy of recipients of
    health services and of adult social care in England,.
    (3) In section 261 (other dissemination of information), after subsection (1)
    insert
    (1A) But the Information Centre may do so only if it considers
    that disseminating the information would be for the purposes
    of
    (a) the provision of health care or adult social care, or
    (b) the promotion of health.
    They are selling your medical records
    patient-level health information
    is inherently identifying

    and linked / episodic data is
    more identifiable than you think
    pseudonymised anonymous

    de-identified anonymous

    anonymous = properly treated,
    aggregated statistics


    personal data open data
    Thank you

    Stay informed:
    www.medconfidential.org
    Twitter: @medConfidential

    Phil Booth
    coordinator@medconfidential.org

    Das könnte Ihnen auch gefallen