1. Freeing the power of administrative data: can Scotland become a global leader? Dr Stephen Pavis Programme Director Farr Institute (Scotland) NSS, NHS

2. Structure of the talk 1.Characteristics of Administrative data 2.Why it’s a valuable resource 3.Some of challenges in ‘freeing its power’ 4.Progress which has been made and future direction As we go through I’ll tell you about some empirical findings to keep your interest

3. What do we mean by Administrative data? Routinely collected data normally during the provision of a service (health, education, criminal justice, benefits and taxation, social care etc) Commonly have National coverage and over a relatively long time period Relatively consistent data definitions and collection processes Important to planning and providing services –Limited control over creation processes –Must undermine primary purpose/use

4. Public sector collects & analyse lots of person level data About service users Workforce Outcomes Health What Health Service does Funding About service users Workforce Outcomes Schools What Schools do Funding About service users Workforce Outcomes Justice What happens in justics system Funding Further Education Higher Education Social care Children’s services But it is in silos

5. Maternity BIRTH DEATH Neonatal Record Child health surveillance Immunisation GP consultations Dental Out patients A&E Hospital Admissions Mental Health Prescribing Screening Community care Cancer registrations NHS data from cradle to grave Suicide

6. Social mobility – by linking data on education, training, employment, unemployment, incomes and benefits Causal pathways over the life course – linking data on education, health, employment, incomes and wealth Informing policies designed to tackle poverty – linking data on incomes and benefits, housing conditions, (re)offending behaviour, exploring the role of poor physical and/or mental health. Report from the Administrative Data Taskforce (ESRC, MRC, Wellcome Trust) Ways we can use Administrative data

7. The human perspective ‘Cycles of deprivation and neglect overlap. The pressure of circumstances, of chronic housing poverty, unemployment, low income, poor wellbeing and poor education all undermine resilience. It’s when these structural conditions combine with other impoverishing experiences – such as violence, crime, isolation, an unhappy childhood, separation and poor mental health – that problems become insurmountable’ Action for Children: Deprivation and risk: the case for early intervention Dame ClareTickell Chief Executive

8. There’s an economic case too ‘The public service bill for the 46,000 most deprived families is over £4billion a year, almost £100k per family.’ ‘Services tend to focus on a single problem of a single person. Treating problems in isolation increases the risk of relapse and creates a costly cycle of managed deprivation. Breaking this cycle will mean…better value for taxpayers’. https://www.gov.uk/government/news 26 th August 2011

9. Administrative data: ‘win’, ‘win’, ‘win’ ‘win’ For Researchers/statisticians –It’s time efficient and cost effective– compared with empirical data collection Policy makers and practitioners need to move beyond the traditional silos Citizens deserve better opportunities and services Economic growth – developing and attracting industry to Scotland

10. Anziolytic benzodiazepines (AB’s) and RTAs Barbone et al used linked prescriptions and Tayside police data to look at AB’s and road traffic accidents The researchers found a dose related relationship and estimate that non driving while on AB’s would prevent 1577 accidents and 110 deaths annually across the UK The research led to a re-labeling of the medication (Barbone et al Lancet 1998)

11. Where are Scotland’s competitive advantages? A small country with relatively stable population Strong administrative data – eg NHS single supplier Strong universities with significant expertise Cross sector and cross discipline networks

12. What are the challenges? 1.We must ensure the public support the use of their data and contribute to debates about what is in the ‘public interest’ 2.Individual privacy must be protected and the law complied with 3.Permission processes must be efficient and not overly bureaucratic 4.We link data efficiently and have high end computing 5.We need multi-disciplinary working

13. What are the Scottish public’s views? Methodologically a difficult area, there are: –multiple ‘publics’ and various opinions –people have different levels of knowledge –we’re discussing multiple datasets –different people want to access data –for different reasons Methods and framing of questions is crucial

14. But some information does exist… Scotland has been leading on this area : Scottish Health Informatics Programme (Wellcome Trust) Data Linkage Framework (Scottish Government)

15. Scottish Health Informatics Programme Most trusted Least trusted NHSScottish GovernmentPrivate sector Purpose of use Academics Wellcome Trust; University of Edinburgh

16. Data sharing for research purposes Most trusted Least trusted Public Sector3 rd SectorPrivate sector Benefit sharing a key factor Sara Davidson, et al Ipsos Mori and University of Edinburgh

17. Future areas for Public Engagement Moving forward we need to have iterative cycles of: –listening to the public –educating on benefits and processes –modifying our procedures and processes Recognised by the ESRC, MRC and Scottish Government

18. Suicide in Scotland Linkage of death records with psychiatric and general hospital admissions >15 years, 1981 to 2010 16,411 people had died; 10,907 had a hospital record 24% of deaths within 3 months of a hospital discharge People who had died were 3.1 times more likely to have last visited a general rather than a psychiatric hospital Dougall, et al University of Stirling, British Journal of Psychiatry (in press)

19. What are the challenges? 1.We must ensure the public support the use of their data and contribute to debates about what is in the ‘public interest’ 2.Individual privacy must be protected and the law complied with 3.Permission processes must be efficient and not overly bureaucratic 4.We link data efficiently and have high end computing 5.We need multi-disciplinary working

20. Permissions to access data Inconsistency across sectors and data controllers Multiple processes and forms often requiring similar information In health research it is common to need ethics committee, PAC, data controllers, and R&D from each Health Board, Privacy Impact Assessment

21. The Information Governance Review (Caldicott 2) ‘(we) heard from researchers that complexity, confusion and lack of consistency… hamper research. … data controllers tend to be risk-averse, erring on the side of caution rather than public benefit’ (p62)

22. The Information Governance Review Caldicott 2 ‘We recommend that the linkage of de- identified but still potentially identifiable information from more than one organisation should be done in specialist, well governed independently scrutinised environments known as ‘accredited safe havens’

23. Future work around permissions The Scottish Government’s Health Information Research Advisory Group is likely to recommend a review of permissions processes to ensure efficiency The Farr Institute and the Administrative Data Research Centre will support a network of accredited safe havens

24. Proportionate Information Governance Safe People –Accredited researchers Safe Data –Linking minimum data to answer question Safe Locations –Controlling access, limiting data travel (unless consented) University of Edinburgh School of Law and NSS have led the way

25. Admissions fell by 17% - 67% of reduction was in non-smokers Fall in England 4% (no legislation); long term trend 3% Non-experimental evaluation (policy) Effect of smoking legislation in Scotland Pell et al, N Eng J Med (2008) 359; 482-491 Acute Coronary syndrome Childhood asthma Pell et al New Engl J M 201o, 363. pp. 1139-1145 Before ban 5.2% increase per annum After ban 18.2% decrease per annum

26. What are the challenges? 1.We must ensure the public support the use of their data and contribute to debates about what is in the ‘public interest’ 2.Individual privacy must be protected and the law complied with 3.Permission processes must be efficient and not overly bureaucratic 4.We link data efficiently and have high end computing 5.We need multi-disciplinary working

27. Linking data and high performance computing Community Health Index as a population spine gives Scotland a competitive advantage Linkage process: separation of functions –personal information split from ‘payload’ data as early as possible –separate organisations ‘Index’ and ‘link’ data Can be used beyond health to link data

28. SHIP IT infrastructure

29. Farr Institute of Health Informatics Research Harnessing Data for Health Science and e-Health Innovation

30. UCL Partners UCL, LSHTM, Queen Mary, Public Health England Scotland Dundee, Glasgow, Edinburgh, St Andrews, Aberdeen, Strathclyde, MRC HGU, NHS NSS CIPHER Swansea, Bristol, Cardiff, Exeter, Leicester, Sussex, NWIS, Public Health Wales HeRC N8 Manchester, York, Lancaster, Liverpool, Sheffield, AHSNs Health Informatics Research Centres Map Source: www.m62.net

31. The Farr Institute in the UK MRC & 9 other funders £39M investment Brings together the Health Informatics Research Centres with additional capital/infrastructure resource

32. Who is William Farr? “Diseases are more easily prevented than cured and the first step to their prevention is the discovery of their exciting causes.” William Farr

33. Farr UK Objectives E-Infrastructure: To establish an outstanding UK e- infrastructure across the Centres. Research: To enhance research productivity across the UK by widening access to well-described datasets through a prominent UK-wide portal, bringing new datasets to the research community and enhancing communication. Capacity: To develop a UK-wide co-ordinated offering for training and capacity development to address the acute skills shortage in health informatics research. Public engagement: To engage the public and patients across the UK and locally, in a novel range of activities to enhance public trust in the use of health records for research.

34. How the £20m capital investment supports the objectives There are five core components of the institute for capital investments 1.Physical centres 2.Safe havens 3.e-infrastructure 4.New data access 5.Communication

35. Intended impact of the Farr Institute New Science Larger Scale Better connections between centres of excellence and datasets New Partnerships – academic, NHS and industry Increase UK skill base Public and patient advocacy

36. The Farr Health Informatics Research Institute Scotland £9M MRC and nine other funders £2M SGHD £0.5M NHS, NSS Scottish Enterprise

40. Farr Institute, Scotland New, innovative Science High performance computing –within a University –a private cloud New datasets –General Practice –Laboratory data – clinical tests –Clinical Images

41. Farr Scotland Safe Havens and IT resources

42. Making it happen in reality Partnerships, networks and federated arrangements are the only way to maximise Scotland’s administrative data Single organisations or individuals cannot achieve this in isolation But this raises new challenges around coordination: researchers need, –a single point of entry –help to navigate the system –to know what’s possible

43. NSS’s eData, Research and Innovation Service (eDRIS) eDRIS aims to: facilitate partnership working between the NHS, academics and industry provide coordination and expert advice to support researchers make research more efficient, easier, save time and encourage better research

44. The eDRIS Service Help with study design Provide expert advice on coding, terminology, meta data and study feasibility Agree deliverables and timelines Facilitate completion of required permissions Liaison with technical infrastructure (safe havens) Liaison with data suppliers to secure data Provide analyses, interpretation and intelligence about data (where required) Support projects from start to finish Build relationship between data suppliers and customers Single point of entry for health research A named Person from start to finish 1 2 3 4 5 6 7 8

45. The Latest News The Economic and Social Research Council have provided additional funding for the analysis of public sector data (£40m UK; £8m Scotland) Expertise and research across wider administrative datasets –Housing –Education –Criminal Justice –Work and pensions –Vital events back to 19 th Century This resource will also be at 9 BioQuarter

46. e Clear governance processes High Data Linkage Framework Farr institute Health Admin data research centre Cross sectorial data No9 Scottish Informatics & Linkage Centre FOUNDATION STONE: GUIDING PRINCIPLES Public communication & engagement High performance computing eData Research and Innovation Service

47. What are the challenges? 1.We must ensure the public support the use of their data and contribute to debates about what is in the ‘public interest’ 2.Individual privacy must be protected and the law complied with 3.Permission processes must be efficient and not overly bureaucratic 4.We link data efficiently and have high end computing 5.We need multi-disciplinary working

48. A new creative environment/culture Multiple skills - same location –Informatics and computing experts –Academics from multiple universities –Data experts –Policy experts –Over time we hope industry will join us

49. Can Scotland become a global leader? We have an opportunity –expertise –data –infrastructure –computing resource We have challenges around –culture change (working across institutions & disciplines) –developing efficient access and linkage processes

50. Thank you for listening s.pavis@nhs.net 0131 2756670