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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
Scottish population and our National Health Service
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
1911 1931 1951 1971
1991 2011
Source: Scotland 2011 Census
Scotland’s Demographics 1911 - 2011
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 15th 2012
£170 Million
40% 15%
28 62
11% 40%
214 1,621
81.0yrs 70.1yrs
84.2yrs 76.8yrs
2011/12 allocations to NHS for Health Inequlities
Exclusive breastfeeding rate at 6-8 weeks
GP consultations for anxiety (per 1000)
% adult smokers
Alcohol-related hospital
admissions per 100,000
Average life expectancy
of men
Average life expectancy of
women
Least deprived areas Most deprived areas
Source: Audit Scotland, October 2013
Key Trends
Population: 5.3 million
% aged 75+ : 7.9%
Budget £12.2 bn in 2016
Circa £2,100 per person
Inputs
• Acute Beds in 2011/12:
16,500 (NHS)
• Doctors in 2012: 12,000
(NHS WTE)
• Nurses / Midwifes in 2012:
56,600 (NHS WTE)
The Scottish Health Service on a Slide
2012/13
5 year Change
Estimated GP Patient Contacts
16,539,000 3.3%
Estimated Practice Nurse Patient Contacts
7,627,000 10.5%
New A&E Attendances
1,561,529 6.8%
Total Outpatient Attendances
4,699,868 4.7%
Total Inpatient/Day Case Discharges
1,582,305 6.8%
Day Case Discharges
448,782 10.6%
Routine Inpatient Discharges
441,024 9.5%
Non-Routine (emergency) Inpatient Discharges
540,890 6.4%
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
Scotland’s vision and use of data
Integration of patient and heterogeneous data - essential for the future of medicine
E-Health Record
Imaging GP record Hospital
admission
Laboratory
data
Genomic
data
Quality Health
Care and Research
Personal
Health
Data
The Future? “4P” Medicine
Predictive Customise diagnosis and treatment
Pre-emptive Better than curative
Personalised Determine risk profiles, predict outcomes
Participatory Involve patients
Made Possible by:
• Genomics • Phenotyping • Informatics • Analytics • New social contract
World Class
Patient care
Translation
Trials and
Innovation
Our Thesis Quality Health Care and Research: From Cell to Community
Excellence
In Life
Sciences
Community Cell
Convergence of Care with Research
Data science
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
Farr Institute
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
The Farr Institute -UK
£39M investment
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.”
Discovery
Science
Citizen-driven Health
Public Health
Learning Health Systems
Precision Medicine
Governance
Interdisciplinary Skills & Capabilities
National Strategy & Leadership
Partnerships
Data Analytics
Safe Havens:
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
Federated Network of Safe havens “Diameter of Trust”
Public Benefits and Privacy Risk Assessment
Proportionate Governance
Category 1: Low impact No further review: standard terms and conditions
Category 2: Medium impact Fast track review – possible further conditions
Category 3: High impact full review possible further conditions
Category 0: Public domain
No further conditions
Public Benefit and Privacy Panel
Data Resources by Location
Maternity
BIRTH DEATH Neonatal Record
Child health surveillance Immunisation
Dental Out patients
(4.4m annually)
A&E
Hospital Admissions
( 1.4m annually) HAI
Prescribing
(90m annually) Screening
Social care
Cancer registrations
(47k annually) Suicide
Substance misuse
Education Looked after children
Community care Care homes BIRTH
Marriage
DEATH
HMRC Tax
DWP Work & Pensions
Census (Scotland & UK)
Housing
Primary care
Imaging data Pathology
Blood tests
Clinical observations
DEATHS BIRTHS
Hospital
BMI data Smoking
Read/Snomed
ct data
National data - Scotland
“Personal Analytics” Community Health Number
Date of Birth Sex Check
07 10 64 02 5 0
Data controllers and public trust
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
Safe People
(approved researchers)
Safe Places
(secure data
centres)
Safe Data
(limited de identified
data)
Public Engagement and Communication
Securing Trust: Data Controllers and Public
Worthwhile projects Public Benefit, scientifically and ethically sound
& approved
Safe Outputs
(SDC prior to release of results)
Dat
a co
ntr
oll
ers
op
t in
to
eac
h p
roje
ct D
ata con
trollers o
pt in
to each
pro
ject
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
Scale and Customers
Programme No. of live projects
No. of eDRIS staff
Farr Institute 269 14
ADRC-S 40 3
Scottish Gov. 16 2
UBDC 1 1
PBPP non research applications
41 0
Total 367
Customer Percentage
Academic 69
NHS and Scottish Government
26
Commercial/industry 2
Charities 2
Examples of research studies Public Health Smoking ban http://www.farrinstitute.org/public-engagement-involvement/100-ways-of-using-data-to-make-lives-
better/case-study/did-the-smoking-ban-work
Epidemiology Acute Pancreatitis http://www.farrinstitute.org/public-engagement-involvement/100-ways-of-using-data-to-make-
lives-better/case-study/predicting-which-patients-in-scotland-might-need-critical-care
Clinical Trial follow-up WOSOPS http://www.farrinstitute.org/public-engagement-involvement/100-ways-of-using-data-to-make-lives-
better/case-study/how-good-are-statins-at-preventing-heart-disease
Safety of Medicines ( and phase 4) New anticoagulant – European Institute of Innovation and Technology
Policy and service improvement Cardiac arrest strategy – Scottish Government http://www.gov.scot/Publications/2015/03/7484
Machine learning Lungsolve – http://www.hra.nhs.uk/news/research-summaries/lung-solve-version-3/
Farr Institute : 100 ways of using data to make lives better
