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Open Pseudonymisation workshop . Nottingham 22 nd Sept 2011. JHC roles. Research chair at UoN –epidemiology, risk prediction and drug safety Developed and run the not-for-profit QResearch database with EMIS Medical Director Clinrisk Ltd (medical software) Inner city GP

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Open pseudonymisation workshop

Open Pseudonymisationworkshop

Nottingham

22nd Sept 2011


Jhc roles
JHC roles

  • Research chair at UoN –epidemiology, risk prediction and drug safety

  • Developed and run the not-for-profit QResearch database with EMIS

  • Medical Director Clinrisk Ltd (medical software)

  • Inner city GP

  • Member of the ECC NIGB


Overall aim
Overall aim

  • Open common technical specification for pseudonymisation

  • allows individual record linkage BETWEEN organisations

  • WITHOUT disclosure strong identifiers

  • Voluntary specification

  • May become standard over time if adopted


Key factors for successful it projects
Key factors for successful IT projects

  • Agreed Purpose

  • Clear requirements

  • Practical affordable solution

  • Right time

  • Right People - skills, experience etc


Terms of engagement
Terms of engagement

  • Intention is for output from workshop to be

    • published

    • open

    • freely available for anyone to use

  • Seek to avoid infringing any existing IP


Key objectives for safe data sharing
Key objectives for safe data sharing

Maximise public benefit

Patient and their data

Minimise risk

Privacy

Maintain public trust


Three main options for data access
Three main options for data access

s251

Maximise public benefit

consent

Pseudo

nymisation

Patient and their data

Minimise risk

Privacy

Maintain public trust


Terminology dh de identification draft standard v1 1 2011
Terminology (DH de-identification draft standard, v1.1 2011)

  • Identifiable information

    • Includes person identifier that will ordinarily and simply identify a person (name, address, dob, postcode, NHS number)

  • De-identified information

    • Information that was identifiable but has had personal identifiers stripped out to create dataset where identifiers not present


Terminology dh de identification draft standard v1 1 20111
Terminology (DH de-identification draft standard, v1.1 2011)

  • Pseudoymised information

    • De-identified where a coded reference used to associate information with a unique individual without enabling that individual to be identified

    • Either reversible or reversible

  • Effectively anonymised information

    • No reasonable chance that recipient could infer identities.

    • Not considered personal data or confidential patient information


Assumptions for today
Assumptions for today

  • Legitimate use of data

    • legitimate purpose

    • legitimate applicant or organisation

  • Ethics and governance approval in place

  • Appropriate data sharing agreements



High level requirements of solution
High level requirements of solution

  • Legal & Ethical

  • Secure

  • Reliable

  • Scalable

  • Confidence profession & public

  • Different unique IDs for each project

  • Affordable

  • Capable of implementation across the NHS


Out of scope for today
Out of scope for today

  • Who provides services?

  • Where its located?

  • How its funded?

  • How its implemented?

  • Broader issues of IG such as

    • De-identification

    • Methods to assess risk of re-identification

    • Policy issues

    • Definition safe haven, honest brokers etc


Open discussion
Open discussion

  • Introduce ourselves

  • What do we want to get from the meeting

  • How do we need to use pseudonymisation in our organisation


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