Proposal of a collaboration to improve the ethnicity classification of patient registers
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Proposal of a collaboration to improve the ethnicity classification of patient registers. Pablo Mateos UCL - CASA 25 th May 2005. Contents. Aims of proposal Mutual Benefits & Justification Members Data Sharing Data Protection Intellectual Property Project Name. 1- Aims.

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Proposal of a collaboration to improve the ethnicity classification of patient registers
Proposal of a collaboration to improve the ethnicity classification of patient registers

Pablo Mateos

UCL - CASA

25th May 2005


Contents
Contents

  • Aims of proposal

  • Mutual Benefits & Justification

  • Members

  • Data Sharing

  • Data Protection

  • Intellectual Property

  • Project Name


1 aims
1- Aims

The purposes of the group are threefold:

  • To facilitate access to the Names-to-CEL directory developed by CASA

  • To develop and to share access to knowledge relating to:

    • Effective use of the Names-to-CEL directory in public health

    • Data mining of birthplace information in the ‘Exeter’ register

  • To improve the quality and accuracy of the directory by contributing anonymised data from operational files


2 mutual benefits
2- Mutual Benefits

Benefits for the model

  • Wider population base per surname

    • More ethnic groups better represented

    • Better Firstname or Surname matches

  • More extensive birthplace name alias tables

Benefits for the PCTs

  • Birthplace information correctly classified

  • Ethnic group classification provided

  • Richer ethnic classification:

    • Beyond 16+

    • At individual level

  • Know-how already built



  • London non 16 ethnic groups 1 2 million people stated other ethnic identities in london 2001 census
    London ‘non-16+ ethnic groups’ (1.2 million people stated ‘other’ ethnic identities in London 2001 Census)

    (.../...)

    Source: 2001 Census GLA commissioned tables


    3 members
    3- Members

    • Primarily aimed at PCTs and health institutions working on improving ethnicity classification

    • Open to any institution interested in benefiting and contributing to the ethnicity classification model

    • Pre-existing ‘operational names data’ at individual level must exist within each member


    4 data sharing
    4- Data Sharing

    • UCL will distribute to members each update of the Name-to-CEL directories:

      • - Surname-to-CEL

        • Forename-to-CEL

    • Members will provide 2 separate files:

    • - Surname-Birthplace aggregation

    • - Forename-Birthplace aggregation

    • There will be no way to link these two files together

    • Only 1 common version of the Name-to-CEL directory will be maintained


    Proposed Data Flow (1)

    Example provided here for Surnames. An exact parallel process applies for First Names

    Input & Processing Module (Highly restricted access)

    PCTs

    BirthPlace Geocoder

    Sur-names

    Records Aggregated by surname

    UCL

    Surname-to-CEL

    Check > threshold

    N

    Leave surname until more records arrive

    Y

    Output Surname

    Current threshold =

    Over 10 persons / surname

    Output Module


    Proposed Data Flow (2)

    Input & Processing Module

    Output Module

    Manual Review

    N

    N

    CEL=Group of COBs

    CEL=COB

    Y

    Visual Inspection

    Surname-to-CEL Assigned

    Updates Distributed

    Surname-to-CEL

    Surname-to-CEL Directory


    5 data protection
    5- Data Protection

    • There will be no way to link the 2 files together (surname or forename)

    • Records in the files will identify aggregations of either a surname or a forename, not individuals

    • A minimum threshold of 10 persons per name will be applied to process & release the name to the output module.

    • A detailed data sharing framework document is being developed to be signed by members


    6 intellectual property
    6- Intellectual Property

    • Intellectual Property of the Names-to-CEL directory is held by University College London

    • Access to this directory, and to the methods and tools developed in the project will be granted free of charge for contributing members

    • A fee will be charged to non-contributing members, as per future arrangements

    • Contributing members are those who provide data to improve the Name-to-CEL allocation


    7 project name
    7- Project Name

    GEONom

    Geographic & Ethnic Origin of Names

    www.casa.ucl.ac.uk/geonom


    8 open discussion
    8- Open Discussion

    8.1. Data Sharing and Data Protection

    8.2. Methodology

    8.3. Applications


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