Record linkage – the need for more effective processes

1. Record linkage – the need for more effective processes Peter Elias EUCCONET Record Linkage Workshop Bergen, 15 – 17th June 2011

2. What are the benefits of record linkage? • For scientific enquiry • Efficiency gains • Accuracy of data, particularly for information otherwise collected by recall; understanding bias; dealing with missing data • Potential longitudinal information in an historical perspective • For respondents • Reducing respondent ‘burden’, shorter surveys or no surveys • For data guardians • Potential improvements in data quality • Production of metadata • Potential improvements in data security

3. What has been achieved in the UK so far? Real success with specific cohorts and particular administrative datasets Rapid advances in record linkage where effective partnerships are in place (e.g. SHIP, SAIL, SLS, Connecting for Health) New data services inaugurated to assist with linkage and security of linked records (Administrative Data Liaison Service and Secure Data Service)

4. What are the different types of record linkages? • Type 1 – integrating records from a range of agencies, such as census, health and education data (this involves anonymisation of records) • Type 2 – integrating records primarily from one sector, such as health (this involves anonymisation of records) • Type 3 – linking administrative records to other studies, including ongoing surveys (such linkages would usually involve consent as the participants would be identified within the survey information)

5. What problems remain in the UK? • interpretation of the legal situation • conditions of access • resourcing requests for access and linkage • sharing of knowledge and development of ‘best practice’ • public awareness and engagement • quality issues

6. Interpretation of the legal situation A number of major pieces of UK and EU legislation cover access to administrative data or have implications for the conditions of access. These include the Data Protection Act 1998, the Statistics and Registration Act 2007, the EU Directive 95/46/EC and the Human Rights Act 1998. The current legislation is not interpreted similarly across different government departments.How can this evolving situation be monitored to provide a consistent interpretation and advice to data controllers?

7. Conditions of access If access for record linkage for research is approved, can linkage be performed by the research applicant or will it be undertaken by the data controller? Will linked data, even if anonymised, be allowed to move outside the authority of the data controller (e.g. to the applicant’s research environment; or outside the UK), or might it need to remain in a safe setting?

8. Resourcing requests for access and linkage Whilst providing cost effective data for research compared with survey methods, data access and linkage has to be resourced. A confusing range of models has evolved through which the marginal costs of data linkage can be recovered, ranging from the use of grants and research awards, through ‘one-off’ charging mechanisms set up by data controllers, to ‘free at the point of access’ methods which rely on wider agreements between data controllers and research funders.

9. Sharing of knowledge and development of ‘best practice’ The methods used to provide access to various forms of administrative data do not facilitate the sharing of knowledge or the spread of best practice across the research community and data controllers. There is no central authority charged with encouraging sharing of best practice.

10. Public awareness and engagement The decentralised approach to access and linkage does not help promulgate the raising of public awareness about the benefits of data linkage. The array of different attitudes and approaches to the use of administrative data may even serve to undermine public understanding of any undertakings given to data subjects to protect their identities and to prevent any unauthorised use of their data. There is no central body charged with providing leadership in engaging the public over the use of administrative data.

11. Quality issues While administrative data provide an exciting resource for policy and research, they are not designed for this purpose and they vary in their quality. There may be no specific commitment made on the part of data controllers and researchers, to feedback any findings they have regarding the quality of administrative data they have been using for research and their ‘fitness for purpose’. There is no central body charged with providing leadership on assessing and recording information pertaining to the quality of administrative data.

12. How will we address these problems? Set up a Task Force – this should have ‘buy-in’ from government departments the scientific research community and funding agencies Prioritise the problems – what can be achieved quickly at low cost and what will require coordinated funding and long term planning? Set a deadline for results Promote the scientific benefits of record linkage

13. Joining it all up internationally • OECD GSF Expert Group (forthcoming report on need for coordination of discovery of and access to data) • Expansion of the Open Research Area for social science (currently UK, Netherlands, Germany, France) • Working with DG Research on Infrastructure development (ESFRI Ris [SHARE; ESS; CESSDA]) • Ensuring that the UK Cohorts are funded for international comparative research • Cohort Resources Facility Leadership Team