Linking social care, housing & health data for statistics

1. Linking social care, housing & health data for statistics Ellen Lynch Scottish Government SWSTAT@scotland.gsi.gov.uk Anthea Springbett ISD Scotland anthea.springbett@nhs.net

2. Overview • Why do we want to link data? • What are our areas of research? • What data do we want to link? • Who is involved in developing the project? • What are the project governance arrangements? • How will we link data? • Timeline of key project stages • Conclusion • Questions

3. Why do we want to link data? • Evidence the interactions between social care, housing and health • Are our social care, housing & health policies working? • Evidence for service planning and service evaluation • Evidence the outcomes of people who use these services

4. What are our areas of research? • Improve our understanding of whether those who have had multiple unplanned admissions to hospital have a social care package in place • Improving the information on people with dementia • Tracking people with dementia over time to provide evidence of how their support packages change and if this impacts on emergency admissions • Improving the information on people who committed suicide

5. What data do we want to link? • Only what is absolutely necessary to answer our research questions….whilst maintaining people’s privacy!

6. Data linkage project Social Care data Health data Housing data Home Care Self Direct Support Mental Health Benchmarking1 General / Acute Inpatient & Day Case (SMR01) Mental Health Inpatient & Day Case (SMR04) Deaths (GROS) Prescribing data To be included following a review of the data collection Linked (anonymised) Social Care, Health and Housing data held in a safe haven within NHS National Services Scotland. Linked data can be used to answer research questions. Access will be provided only to approved researchers who have completed a training course in data protection, security and disclosure control. 1 – Mental Health Benchmarking is a proposed new data collection which should be available from 2012,

7. Who are involved in developing the project? • Scottish Government – statisticians, solicitors & policy • ISD Scotland/SHIP – analysts, data linking specialists, IT specialists, Caldicott Guardians • GROS – Analysts • COSLA & ADSW representatives • Other local authority representatives • Social care & health service users

8. What are the governance arrangements? The Ministerial Strategic Group on Health and Community Care SG and GROS Data Sharing/Linking Group (Jointly chaired by Chief Statistician and Registrar General) The Health and Community Care Delivery Group Linking Social Care, Housing & Health Data Governance Group Linking Social Care, Housing & Health Data Operating Group (supports both the Governance Group and the Reference group) Linking Social Care, Housing & Health Data Reference Group

9. What are the governance arrangements (cont…)? • Support from the Health and Social Care Delivery Group • Support from Association of Directors of Social Work • Permission from data controllers • Project presented to Information Commissioner’s Office • Ethical approval (if deemed ‘research’ and not ‘audit’) • Permission from CHI Advisory Group • Permission from Privacy Advisory Committee

10. How we will link data? • Literature review of international data linking best practice • Utilise the Scottish Health Informatics Programme (SHIP)

11. What is SHIP? • Scottish Health Informatics Programme • Funded by Wellcome Trust, MRC, ESRC • Academic/NHS consortium • 2009/10 to 2012/13 • SHIP is: • “an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs)”

12. Core Provisioning data sets for research (SHIS-R) Governance Engaging researchers Public engagement Research EPR support of clinical trials National epidemiology Pharmacovigilance Demographic, socioeconomic and environmental data linkage SHIP programmes

13. ISD’s contribution to SHIP (SHIS- R) • Procedures for secure access • National routine NHS Scotland datasets available to researchers throughout UK • Single interface for linkage with external data sets • Portal for knowledge about availability of appropriate health related data • Metadata

14. How has ISD gone about this? • Review of existing UK and worldwide models • Development of a ‘best practice’ model and consultation • 3 short-life working groups • Governance • IT • Administration

15. Approval of linkage requests PAC and Data Controllers Data Source 1 Data Source 2 Data Source 3 ISD SCI DC University dataset Indexing Service Data Archive Disclosure Control Linkage agent Project work space I’d like to link some data Safe Haven

17. Indexing Service • The indexing service uses CHI as a population reference file • Use of population reference file maximises leverage of linkage • It does not release CHI numbersor CHI data, but rather index numbers • Different index numbers are used for each data set to be linked • Identifiers and ‘payload data’ are always kept separate

18. The role of the research coordinator Data permissions Data release Non-NHS Data controller National PAC (ISD, GROS) Local PAC or equivalent (NHS HB) Non-NHS dataset ISD dataset Local HB dataset Referral of data request National Indexing Service Data request Research Coordinator Creation and storage of linked dataset Linker (NSS) Advice & guidance Safe haven Training Researcher approval Researcher approval and secure access

19. Timescales • The IT build for the indexing service has been completed and is in place. • ‘The linker’ will be built before the autumn. • The whole system should be live by Dec 2011.

20. (Provisional) Timeline of key project stages • Present project to LAs/Information Commissioner’s Office/ISD’s Caldicott Guardian – Mar-May 2011 • Focus groups on privacy – Apr-Jul 2011 • Direct Payments 2010/11 data submitted – May 2011 • Confirm local authorities participating – Jun 2011 • Home care 2011 data submitted – Jul 2011 • Apply for project approval – Aug 2011-Autumn 2011 • Data sharing agreements in place – Autumn 2011 • Data linking – Autumn 2011/Winter 2011 • Linked data ready for analysing – Early 2012

21. Conclusion • Strong support across SG, ISD Scotland, ADSW, The Health & Community Care Delivery Group…… but we will all need to do more to promote and educate people about the project over the coming months. • The linked data will enable national and local: • Outcomes focussed analysis • Evidence the impact of service intervention • Improvement in the planning of services • This can be achieved through a secure, transparent model based on international best practice. • Ambitious, groundbreaking (?!) (34 organisations working together!), achievable (with a lot of hard work!)

22. Questions