Freeing the power of administrative data:can Scotland become a global leader?

Dr Stephen Pavis

Programme Director

Farr Institute (Scotland)

NSS, NHS

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

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

Public sector collects & analyse lots of person level data

About service users

Workforce

Outcomes

Health

What HealthService does

Funding

About serviceusers

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’sservices

But it is in silos

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

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

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

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

26th August 2011

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

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)

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

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

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

But some information does exist…

Scotland has been leading on this area : •Scottish Health Informatics Programme (Wellcome Trust)• Data Linkage Framework

(Scottish Government)

Scottish Health Informatics Programme

Most trusted Least trusted

NHS Scottish Government Private sector

Purpose of use

Academics

Wellcome Trust; University of Edinburgh

Data sharing for research purposes

Most trusted Least trusted

Public Sector 3rd Sector Private sector

Benefit sharing a key factor

Sara Davidson, et al Ipsos Mori and University of Edinburgh

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

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)

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

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

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)

The Information Governance ReviewCaldicott 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’

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

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

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 annumAfter ban 18.2% decrease per annum

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

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

SHIP IT infrastructure

Farr Institute of Health Informatics Research

Harnessing Data for Health Science and e-Health Innovation

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

The Farr Institute in the UK

MRC & 9 other funders£39M investmentBrings together the Health Informatics Research Centres with additional capital/infrastructure resource

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

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.

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

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

The Farr Health Informatics Research Institute Scotland

£9M MRC and nine other funders £2M SGHD £0.5M NHS, NSSScottish Enterprise

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

ServerServer

User

Site

Farr National Safe HavenFarr accredited Regional

Safe Havens (x4)

SHIP/Farr analytic environment / ATOS

hosted

Server

Farr datastore/ university hosted

Farr analytic private cloud /university

environment

Server

National datasets NSS

Server

Local/regional datasets

Server

Regional analytic environments

SiteSite

Accredited user can access any of analytic environment securely for a specific project

depending on compute needs (assuming permissions in place )

Data can move from any storage location to any analytic platform (with appropriate data controller

permission)

Farr Safe Havens manage dataset access and support researchers

Farr Scotland Safe Havens and IT resources

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

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

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

45

6

7

8

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 19th Century

• This resource will also be at 9 BioQuarter

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Data Linkage Framework

Farr instituteHealth

Admin data research centre

Cross sectorial data

No9Scottish Informatics & Linkage Centre

FOUNDATION STONE: GUIDING PRINCIPLES

Public communication & engagement

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eData Research and Innovation Service

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

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

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

Thank you for listening

s.pavis@nhs.net

0131 2756670