scottish health informatics programme (ship) anthea springbett nhs information services division
TRANSCRIPT
Scottish Health Informatics Programme (SHIP)
Anthea SpringbettNHS Information Services Division
Structure
• Information Services Division (ISD)– Who are we?– What do we do?
• What is SHIP?• Indexing & Linking• Data security
ISD’s Vision
To be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service
ISD’s Purpose
To deliver effective national and specialist intelligence services to improve the health and wellbeing of people in Scotland
VisionTo be a valued partner in improving health and wellbeing in Scotland, by providing world class intelligence service
Better information
Better decisions
Better health
NHS
Local authorities
Research community
Education
Scottish Government
A&E
Maternity
BIRTH
DEATH
Scottish Birth Record SBR
Child health surveillance
Immunisation
GP consultations
Dental SMR13
Out patients SMR00 Hospital Admissions SMR01
Mental Health SMR04
Prescribing Screening
Cancer registrations SMR06
Cancer registry
Collecting data from cradle to grave …
Caldicott Principles
1. Justify the purpose(s) of using confidential information
2. Do not use patient-identifiable information unless it is absolutely necessary
3. Use the minimum necessary patient-identifiable information that is required
4. Access to patient-identifiable information should be on a strict need-to-know basis
5. Everyone with access to patient-identifiable information should be aware of their responsibilities
6. Understand and comply with the law
ISD Medical Record Linkage Team
• Experience & expertise• Probabilistic linkage• CHI seeding• Automated indexing process• Clerical review• Health & cross-sectoral linkages• Data transmission
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)”
SHIP programmes
Core1. Provisioning data sets
for research (SHIS-R)2. Governance3. Engaging researchers4. Public engagement
Research1. EPR support of clinical
trials2. National epidemiology3. Pharmacovigilance4. Demographic,
socioeconomic and environmental data linkage
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
Project work space
Data Archive
Disclosure Control
IndexingService
Local Authority dataset
DeathsAcute
hospital admissions
Safe Haven
Approval of linkage requests PAC and Data Controllers
Data Source 1 Data Source 2 Data Source 3
Linkage agent
I’d like to link some data
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
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
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
Indexing service sends key to Linkage Agent
Datasource 1 Datasource 2
Project code Linkage IDs Payload data
Project code Linkage IDs Payload data
Indexing Service
Datasource 1
Unique IDs Names Addresses Dates of birth
Datasource 2
Unique IDs Names Addresses Dates of birth Project code
Unique IDs Linkage IDs
Project code Unique IDs Linkage IDs
Linkage Agent
Project code Linkage IDs Linkage IDs Payload data Payload data
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
Linkage agent
• 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
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
Data archiving
• Secure long term storage• Data travel: archive linkage agent • Destruction of files• Audit
The role of the research coordinator
Data permissions Data release
Local Authority data controller
NationalPAC(ISD, NRS)
Local PACor equivalent(NHS HB)
Local Authoritydataset
Local HBdataset
ISD dataset
Referral ofdata request
Datarequest
ResearchCoordinator
Advice &guidance
TrainingResearcher approval
Safe haven
Researcher approval and secure access
Linkage agent (NSS)
NationalIndexingService
Creation and storage of linked dataset
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.
