1. Scottish Health Informatics Programme (SHIP)
Anthea Springbett
NHS Information Services Division

2. Structure Information Services Division (ISD) Who are we?
What do we do?
What is SHIP?
Indexing & Linking
Data security

3. ISD’s Purpose ISD’s Vision
To deliver effective national and specialist intelligence services to improve the health and wellbeing of people in Scotland
ISD’s Vision
To be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service

4. Research community
Scottish Government
Local authorities
Education
NHS
Vision To be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service
Better information
Better decisions
Better health

5. Collecting data from cradle to grave …
Mental Health SMR04
Dental SMR13
Hospital Admissions SMR01
Out patients SMR00
Scottish Birth Record SBR
GP consultations
BIRTH
DEATH
Maternity
Prescribing
Screening
Immunisation
Cancer registry
A&E
Child health surveillance
Cancer registrations SMR06

6. Caldicott Principles
Justify the purpose(s) of using confidential information
Do not use patient-identifiable information unless it is absolutely necessary
Use the minimum necessary patient-identifiable information that is required
Access to patient-identifiable information should be on a strict need-to-know basis
Everyone with access to patient-identifiable information should be aware of their responsibilities
Understand and comply with the law

7. ISD Medical Record Linkage Team
Experience & expertise
Probabilistic linkage
CHI seeding
Automated indexing process
Clerical review
Health & cross-sectoral linkages
Data transmission

8. What is SHIP? Scottish Health Informatics Programme
Funded by Wellcome Trust, MRC, ESRC
Academic/NHS consortium
2009/10 to 2012/13
SHIP is:
“an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs)”

9. SHIP programmes Core Research
Provisioning data sets for research (SHIS-R)
Governance
Engaging researchers
Public engagement
Research
EPR support of clinical trials
National epidemiology
Pharmacovigilance
Demographic, socioeconomic and environmental data linkage

10. ISD’s contribution to SHIP (SHIS- R)
Procedures for secure access
National routine NHS Scotland datasets available to researchers throughout UK
Single interface for linkage with external data sets
Portal for knowledge about availability of appropriate health related data
Metadata

11. PAC and Data Controllers
Approval of linkage requests
PAC and Data Controllers
Data Source 1
Data Source 2
Data Source 3
Acute
hospital
admissions
Deaths
Local
Authority
dataset
Indexing
Service
Data
Archive
Disclosure
Control
Linkage agent
Project
work space
I’d like to link some data
Safe Haven

12. Expected benefits of SHIP
High standards of governance and technical processes
Better data security and less data travel
Dedicated research co-ordinators to assist researchers with projects
Register of approved researchers
Statistical disclosure control to protect patient confidentiality
Excellent research that has a beneficial impact on society and the economy

13. Data transmission Receipt of identifiers for Indexing
Return of project code and linkage IDs
Receipt of ‘pay load’ data
Return of results
Any of the above could be from within or outwith NHS net

14. Indexing service ISD currently runs an indexing service
eg. maintains hub for eCare
Same process for SHIP indexing
Requires secure data transmission
Personal identifiers always separate from payload

16. Indexing Service
The indexing service uses CHI as a population reference file
Use of population reference file maximises leverage of linkage
It does not release CHI numbers or CHI data, but rather index numbers (linkage IDs)
Different index numbers (linkage IDs) are used for each data set to be linked
Identifiers and ‘payload data’ are always kept separate

17. Linkage agent Local and remote Operating features:
Receipt of data items
Receipt of indexing codes
Linkage + storage of files
Statistical software
Access via dumb terminals
Local and remote
High performance for researchers

18. Dumb terminal access ISD + (~5) other locations in Scotland
Secure physical setting
Login to ISD linkage agent (via Citrix)
Remote login to other linkage agents
Audit of activity

19. Data archiving Secure long term storage
Data travel: archive linkage agent
Destruction of files
Audit

20. The role of the research coordinator
Data permissions
Data release
Local Authority data controller
National
PAC
(ISD, NRS)
Local PAC
or equivalent
(NHS HB)
Local Authority
dataset
ISD dataset
Local HB
dataset
Referral of
data request
National
Indexing
Service
Data
request
Research
Coordinator
Creation and
storage of
linked dataset
Linkage agent (NSS)
Advice &
guidance
Safe haven
Training
Researcher approval
Researcher approval and secure access

21. Timescales
The IT build for the indexing service has been completed and is in place.
The linkage agent build is under negotiation.
The whole system should be live by early 2012.

22. Sail gives way to steam …