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Data linking – Project update

Data linking – Project update. 5th February 2013 – Social care event Atlantic Quay Ellen Lynch, Euan Patterson & Philip Brown. Overview. Project aims Pilot update Pilot aims Participating local authorities What will participation involve (from a LA view)

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Data linking – Project update

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  1. Data linking – Project update 5th February 2013 – Social care event Atlantic Quay Ellen Lynch, Euan Patterson & Philip Brown

  2. Overview • Project aims • Pilot update • Pilot aims • Participating local authorities • What will participation involve (from a LA view) • Edinburgh’s experience (pilot phase 1) • Pilot phase 2 time scales • Planned analysis • Project roll out • Future social care data linkage developments • Broader data linkage developments

  3. Aims of project • Evidence the interactions between social care, housing support and health • Evidence for service planning and service evaluation • Evidence the outcomes of people who use these services • Evidence for indicators • Share and link data based on international data linking best practice • e.g. separation of personal data to attribute data • Develop statistical/research skills of analysts across Scottish Government (SG), Information Services Division (ISD), NHS Boards and local authorities

  4. Pilot • Scottish Government (SG) wrote to Directors of Social Work in Autumn 2011 asking for volunteers to participate in the pilot. • Data sharing agreement issued (September 2012) to local authorities who volunteered to participate in the pilot. • 11 local authorities have returned signed data sharing agreements: Argyle & Bute North Ayrshire Clackmannanshire Scottish Borders East Renfrewshire South Ayrshire Edinburgh South Lanarkshire Eilean Siar Stirling Highland

  5. Pilot • Split into 2 phases • 1st phase - Edinburgh (Dec 2012-) • Test instructions document • Test templates • Test data transfer method • Quality assure CHI indexing and linkage • Quality assure (health, social care, deaths) data extraction • Test safe haven - analytical software • Develop syntax and create derived variables • Review 1st phase • 2nd phase - remaining pilot local authorities (Feb 2013-)

  6. What will participation involve (LA activity) • Actions for ALL • Preparation of data: Data cleaning, removal of duplicates. • Read PIA document • Data Sharing Agreement • Read instructions for data sharing process • Actions for PILOT LA’s • IT checks and possible work to enable secure data transfer • Complete ISD template, so that the personal identifiers are ready to send • Send personal identifiers to ISD via secure data transfer (when requested) • Check data when returned from ISD and prepare templates for sending linkage ID’s, project code and unique ID to SG (via Proc.Xed.net)

  7. Process of uploading data to create a linked dataset

  8. Process of uploading data to create a linked dataset • Template available from Scottish Government website Health, Social Care and Housing - Data Supplier Area • No duplicates should be included. • Provide as many of the data items as possible/available. Unique client ID, Surname, Forename, Gender, DOB & Postcode. If available DOD, CHI number or NHS number. • Dates must be in YYYYMMDD format

  9. Process of uploading data to create a linked dataset

  10. Process of uploading data to create a linked dataset • Linkage ID’s and Project ID returned from ISD with Unique Client ID • Check data. How many clients weren’t matched etc. • Match linkage ID’s on to client ID’s used with each data return (Home care 2010 & 2011, SDS 2009-10 & 2010-11). This MUST be the unique ID originally used when submitting the data previously to the SG. • Create the four templates required for upload to ProcXed (Home care 2010 & 2011, SDS 2009-10 & 2010-11).

  11. Process of uploading data to create a linked dataset

  12. Social Care, Housing& Health Data linkage process from an LA perspective

  13. Datasets involved • 2010 Home Care • 2010 Self Directed Support • 2011 Home Care • 2011 Telecare • 2011 Self Directed Support

  14. Requirements • One list of everyone in the returns • Name • Date of birth • Address

  15. Problems • Client details – original data • Duplicate clients • Different years • Same year different datasets

  16. Process • Submit unique individuals to ISD • ISD return a reference number • Attach new reference number to the returns • Upload via ProcXed

  17. Review of pilot phase 1 (so far) • Instructions document improved • Templates tested successfully • Issues with data transfer from Edinburgh to ISD identified • IT issues, such as installing required software and firewall reconfiguration • Developing alternative secure data transfer methods with ISD • Data transfer from Edinburgh to SG tested successfully • Data transfer from SG to ISD tested successfully

  18. Pilot (phase 2) • From Jan 2013 • Prepare data and complete templates • Instructions will be issued by SG once data sharing agreement signed by all organisations • Personal identifiers securely transferred by local authority* to ISD Scotland (~ Feb 2013) • Person unique ID and linkage ID back to local authority* (~ Mar 2013) • Home care/Direct payment client ID and linkage ID to the SG via ProcXed.Net (~ Mar 2013) • Linkage ID and attribute data securely transferred by the SG to ISD Scotland (~Mar 2013) • Datasets deposited in safe haven (~Mar/Apr 2013) *or Scottish Government where personal identifiers are held

  19. Pilot (phase 2) cont…... • Create derived variables • Finalise statistical disclosure control guidance (Spring 2013) • Finalise first full release of metadata (Spring 2013) • Analysis (Spring 2013-) • Review pilot (2013) • Establish code bank (2013) • Establish analytical network?? • Produce analytical papers with colleagues in local authorities/NHS Boards • Disseminate analyses across Scottish Government, NHS Boards, local authorities (2013)

  20. Time scales • Complex project: • Multiple organisations • Multiple teams (7) across the ISD Scotland and Scottish Government • Approx 23 staff across the ISD Scotland and Scottish Government directly involved at different stages • Deadlines • Important to try and meet as impact on every team and across multiple organisations (e.g. linkage IDs won’t be created by ISD until the remaining 10 pilot local authorities have all submitted their personal identifiers). • If you can’t meet the deadline, please get in touch as early as possible • A lot of the preparation can be done in advance - including for those local authorities who will join at full roll out stage. • Data sharing agreements • Data cleaning • Completion of templates

  21. Analytical plan (1) • 3 initial main areas of analysis: • Improving the analytical evidence around people with dementia • Using social care, SMR 01, SMR 04 and prescribing data to derive a dementia flag • Evidence dementia patient health & social care pathways

  22. Analytical plan (2) • Improve the analytical evidence around people with mental health problems and for those who have died by probable suicide • Using social care, SMR 01, SMR 04 and deaths data to derive a mental health flag and a suicide flag. • Evidence health & social care pathways

  23. Analytical plan (3) • To evidence if patients with multiple unplanned admissions to hospital have a social care package in place and/or on multiple prescriptions, and how changes in social care packages/multiple prescriptions impact on unplanned admissions. • Includes estimating costs of health & social care packages

  24. Analytical plan cont….. • Papers will contain local authority/NHS Board level analysis where possible. • Those local authority/NHS Board analysts who have noted interest in accessing data via safe haven then Scottish Government will be in touch over the next couple of months about next steps/requirements. • Suggestions of future analysis welcome!

  25. Full project roll out • Required to provide the Privacy Advisory Committee a report of the pilot. If granted approval, 2012 data onwards can be linked and project will be rolled out across remaining local authorities. • From Autumn 2013 • Home care and Direct payments data for 2010, 2011, 2012 • Social care data 2013

  26. Future social care data linkage development • Include Scottish Care Home Census long stay residents • Personal identifiers added to census from 2012/2013 • Potential project to link social care data to the 2011 population census to study: • formal and informal care (e.g. age of carer) • Household composition (e.g. single person households)

  27. Broader data linkage developments • Scotland-wide Data Linkage Framework: Joined up data for better decisions • “Our vision for the future is one where evidence of what works in delivering positive outcomes for all of Scotland is delivered quickly and efficiently with minimal burden on front-line services. By improving the ethical and legal governance arrangements, and the technical capacity to securely and efficiently link statistical data, we will enable the research needed to inform policy decisions.……” • 8th Nov 2012, 2 key documents published: • A Strategy for Improving Data Access and Analysis • Guiding Principles for Data Linkage

  28. The Data Linkage Framework • Concerned exclusively with data linkage for research and statistical purposes. It does not cover the sharing of personal information about an individual between organisations in order to deliver a co-ordinated service to that person. • Long term vision for data linkage in Scotland which will take many years to realise fully • The approach will be iterative, engaging with stakeholders and the public as plans are developed • Join-up existing linkage programmes and projects to make better use of existing resources • Further information: • http://www.scotland.gov.uk/Topics/Statistics/datalinkageframework

  29. The Data Linkage Framework • Composed of four blocks: • The Guiding Principlesto assist data controllers and decision makers take a proportionate approach to managing the risks inherent in any data linkage; • A Privacy Advisory and Ethics Committeeto advise on data sharing and linkage and associated ethical, legal and social issues; • Information Gateway and Data Linkage Serviceto support researchers and data custodians develop legal, ethical and practical linkage projects, provide separated indexing and linking functions for cross-sectoral data, and secure access for analysis; • The Steering Groupto oversee the strategic direction of the Linkage Centre and Advisory Committee, ensuring a joined-up approach with other major developments in Scotland.

  30. Further information • Linking social care, housing & health data project: • http://www.scotland.gov.uk/Topics/Statistics/Browse/Health/Datalinking/HealthSocialCareandHousin • Ellen Lynch / Euan Patterson / Julie Rintoul • SWStat@scotland.gsi.gov.uk • Data Linkage Framework: • http://www.scotland.gov.uk/Topics/Statistics/datalinkageframework • Sara Grainger • sara.grainger@scotland.gsi.gov.uk 0131 244 0329

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