Dr Stephen Pavis NHS National Services Scotland

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1 Dr Stephen Pavis NHS National Services Scotland

2 The next 25 minutes Brief overview of Scotland and its health service Scotland s vision around data use The Farr Institute What it is? How we use data? Case studies

3 Scottish population and our National Health Service

4 Scottish Healthcare context Population 5.29M Single health care provider 14 Territorial Boards 6 Special Health Boards 38 Hospitals, 1020 General Practices High rates of morbidity of common complex disease Unique patient identifier

5 Scotland s Demographics Source: Scotland 2011 Census

patients with several chronic diseases is now the most important task facing

6 Population-based study 1.75M people in Scotland More people have 2 or more CDs than one Management of patients with several chronic diseases is now the most important task facing health services in developed countries, which presents a fundamental challenge to the single-disease focus that pervades medicine Lancet May 15 th 2012

7 Least deprived areas Most deprived areas Average life expectancy of women 84.2yrs 76.8yrs 170 Million 2011/12 allocations to NHS for Health Inequlities 40% 15% Exclusive breastfeeding rate at 6-8 weeks Average life expectancy of men 81.0yrs 70.1yrs GP consultations for anxiety (per 1000) Alcohol-related hospital admissions per 100, ,621 11% 40% % adult smokers Source: Audit Scotland, October 2013

8 The Scottish Health Service on a Slide Key Trends Population: 5.3 million % aged 75+ : 7.9% Budget 12.2 bn in 2016 Circa 2,100 per person 2012/13 5 year Change Estimated GP Patient Contacts 16,539, % Estimated Practice Nurse Patient Contacts 7,627, % New A&E Attendances 1,561, % Inputs Acute Beds in 2011/12: 16,500 (NHS) Doctors in 2012: 12,000 (NHS WTE) Nurses / Midwifes in 2012: 56,600 (NHS WTE) Total Outpatient Attendances 4,699, % Total Inpatient/Day Case Discharges 1,582, % Day Case Discharges 448, % Routine Inpatient Discharges 441, % Non-Routine (emergency) Inpatient Discharges 540, %

9 Health and Social Care in Scotland The case for change population profile pattern of illness prevalence of long-term conditions in the elderly the accumulated burden of long term conditions reduced independence and functioning, resulting in a shift from predominantly medical to predominantly social care unacceptable health inequalities: amongst men, the life expectancy for the most deprived is only 71.3 years - ten years less than the most affluent; the most deprived group of men are likely to experience 23 years of ill-health before their death technology and the development of medicines brings benefits, but it also often brings significant cost increases; the opportunity to reduce failure demand. This occurs when there has been a delay in presentation, a failure of early diagnosis or poor initial management, resulting in a need for more invasive, risky and expensive treatment at a later date. Challenge : Better Quality at Reduced Cost

10 Scotland s vision and use of data

11 Integration of patient and heterogeneous data - essential for the future of medicine Laboratory data Genomic data Personal Health Data E-Health Record Quality Health Care and Research Imaging GP record Hospital admission

12 The Future? 4P Medicine Predictive Pre-emptive Personalised Participatory Customise diagnosis and treatment Better than curative Determine risk profiles, predict outcomes Involve patients Made Possible by: Genomics Phenotyping Informatics Analytics New social contract

care Translation Trials and Innovation Excellence In

13 Our Thesis Quality Health Care and Research: From Cell to Community Data science World Class Patient care Translation Trials and Innovation Excellence In Life Sciences Community Cell Convergence of Care with Research

Data Sharing Underpinning policy A Data Vision for Scotland - supports trustworthy uses of data for public benefit, continuing our reputation for the safe, secure and transparent use of data.

The Data Linkage Framework established to deliver the Strategy, the Framework supports collaborative working, sharing of best practice and joined-up approaches to resource investment across a number

14 Data Sharing Underpinning policy A Data Vision for Scotland - supports trustworthy uses of data for public benefit, continuing our reputation for the safe, secure and transparent use of data. The Data Linkage Strategy Joined Up Data for Better Decisions sets out our ambitions for making better use of data that already exists in Scotland through linkage. The Data Linkage Framework established to deliver the Strategy, the Framework supports collaborative working, sharing of best practice and joined-up approaches to resource investment across a number of key public sector organisations across Scotland. The Framework comprises: The Scottish Informatics and Linkage Collaboration (SILC) comprises services and facilities to support data linkage across all sectors to ensure that Scotland realises the benefits that can be derived from legal, ethical and carefully controlled use of data. The wider SILC network includes Farr and the ADRC. The Guiding Principles for Data Linkage supports the secure and efficient sharing and linkage of data for research and statistical purposes in the public interest. The Safe Haven Charter Public Benefit and Privacy Panel

15 Farr Institute

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

17 The Farr Institute -UK 39M investment

18 Our Vision To harness health data for patient and public benefit by setting the international standard in trustworthy reuse of electronic patient records and related linkable data for large-scale research.

19 Discovery Science Governance Interdisciplinary Skills & Capabilities Citizen-driven Health Public Health National Strategy & Leadership Data Analytics Precision Medicine Partnerships Learning Health Systems

remote access Working to common security and data sharing principles and standard Work collaboratively allows

20 Safe Havens: Federated Network of Safe havens Diameter of Trust One in each of the four NHS Research Scotland nodes National Safe Haven These providing services and support to other units Data enclaves queries through remote access Working to common security and data sharing principles and standard Work collaboratively allows data sharing, inter-operability External accreditation to provide assurance to data controllers, patients and the public 20

21 Proportionate Governance Category 3: High impact full review possible further conditions Category 2: Medium impact Fast track review possible further conditions Public Benefits and Privacy Risk Assessment Category 1: Low impact No further review: standard terms and conditions Category 0: Public domain No further conditions Public Benefit and Privacy Panel

22 Data Resources by Location Neonatal Record BIRTH Dental Maternity Child health surveillance Prescribing (90m annually) National data - Scotland Out patients (4.4m annually) A&E Immunisation Screening Substance misuse Hospital Admissions DEATH ( 1.4m annually) HAI Suicide Cancer registrations (47k annually) BIRTHS Primary care Hospital DEATHS Smoking BMI data Read/Snomed ct data Imaging data Pathology Clinical observations Blood tests BIRTH Education Looked after children Marriage Housing Community care Care homes DEATH HMRC Tax DWP Work & Pensions Social care Census (Scotland & UK)

23 Personal Analytics Community Health Number Date of Birth Sex Check

24 Data controllers and public trust

25 One way mirror: Questions in the public s mind WHY: Is it for a particular public benefit and not just private profit? WHO: Can the people using my data be trusted to produce a public benefit? WHAT: Am I giving sensitive data? Could it be linked back to me? HOW: Are there safeguards in place to keep my data private and secure? Ipsos Mori 2016

27 Data controllers opt in to each project Securing Trust: Data Controllers and Public Worthwhile projects Public Benefit, scientifically and ethically sound & approved Safe People (approved researchers) Safe Data (limited de identified data) Safe Places (secure data centres) Safe Outputs (SDC prior to release of results) Data controllers opt in to each project Public Engagement and Communication

Provide analyses, interpretation and intelligence about data (where required) Liaison with technical infrastructure (safe havens) Facilitate completion of required permissions The edris Service 7 6 8

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

29 Scale and Customers Programme No. of live projects Farr Institute ADRC-S 40 3 Scottish Gov UBDC 1 1 PBPP non research applications Total No. of edris staff Customer Percentage Academic 69 NHS and Scottish Government 26 Commercial/industry 2 Charities 2

30 Examples of research studies Public Health Smoking ban Epidemiology Acute Pancreatitis Clinical Trial follow-up WOSOPS Safety of Medicines ( and phase 4) New anticoagulant European Institute of Innovation and Technology Policy and service improvement Cardiac arrest strategy Scottish Government Machine learning Lungsolve Farr Institute : 100 ways of using data to make lives better

31 Dr Stephen Pavis NHS National Services Scotland

FINANCE COMMITTEE DEMOGRAPHIC CHANGE AND AGEING POPULATION INQUIRY SUBMISSION FROM NHS NATIONAL SERVICES SCOTLAND

FINANCE COMMITTEE DEMOGRAPHIC CHANGE AND AGEING POPULATION INQUIRY SUBMISSION FROM NHS NATIONAL SERVICES SCOTLAND Background 1. It is clear from consultation carried out for the National Information and