Transcript SPIRE Project

SPIRE Project
Scottish Primary Care Information Resource
SCIMP Conference 2013
Session Aims
1. To provide an overview of the SPIRE project and
the service that will be developed.
2. To answer any questions that you may have
about SPIRE.
What is SPIRE?
Objective:
• To provide a safe and secure national
data extraction system from General
Practice Clinical IT systems in Scotland.
Questions covered by
Presentation
• How did we get here?
• What are the benefits?
• How will data be used?
• What types of data will be extracted?
• How will SPIRE safeguard patient confidentiality?
• What options are there for GPs & patients in
respect of participation in SPIRE?
• What are the timescales for delivery?
• What progress has been made?
Background to SPIRE
• Primary care records contain potentially the most
comprehensive source of data on health of the
Scottish population
– vast majority of population registered with a GP
– estimated 24M consultations recorded
• HOWEVER – There were limitations of previous
national sources (PTI / PCCIU) and
• Approaches to data extraction varies between NHS
Boards
– Variety of solutions of varying sophistication
– Duplication
– GP workload / IT system performance
– Governance
Lead-up to Project
• Data Extraction Short Life Working Group set up by
Primary Care PMG
– Representatives from BMA, SG, SCIMP, eHealth,
NSS, Academia, NHS Boards
– Asked to propose a way forward with regard to
data, information & extraction requirements
• SLWG proposed the development of a National GP
Information Service hosted by NSS. This was
endorsed by PC-PMG & eHealth leads
• First Project Board met in April 2013
Benefits of SPIRE
• National mechanism for data extract requests
– Reduced duplication
– Reduced impact on practice workloads
– Standard processes
– Transparent governance
• Standardised approach to Information Governance
• Information & Intelligence to support a number of
appropriate uses
– Filling the well known gap data/intelligence
sources
Uses at National /
NHS Board level
Informing national policy
• Primary Care Indicators
• Evidence base for policy development
QOF / Data for payment
purposes
• Achievement
• Multiple morbidity
• Payment
• Age / sex breakdown
• Prevalence
Local ‘whole system’
analysis & planning
• Referral patterns to secondary care
Research, including data
linkage
• Reasons for prescription
Public Health Surveillance
• Seasonal ‘flu
• Patient outcomes (No. referrals, urgency, treated / referred back, attendance
frequency)
• Anonymised / identifiable data sets for research
• Vaccine uptake
• Vaccine efficacy
National primary care
publications & reports
• National Statistics
• IRs / PQs / FOIs
• Management reports
What is SPIRE?
• SPIRE will
– Develop a national data extraction system to:
• provide routine extracts to support QOF
payments;
• maintain a national dataset; and
• perform bespoke extracts (e.g. approved
research)
– Provide a National Analysis & Intelligence Service
– Demonstrate robust Information Governance
National Dataset
• Aims to cover majority of user information needs
• Specification of dataset will be agreed via the Independent
Advisory Group (IAG)
• Will include both aggregate & pseudonymised patient-level
data
• Populated & maintained by aggregate and pseudonymised
patient-level data extracts covering
– Demographics
– Read codes
– Encounters
– Prescriptions
• Patient identifiers extracted and stored separately primarily
to facilitate data linkage
• National dataset information will only be accessed by named
and appropriately authorised individuals
Patient Registration Form
GPs are the data controllers:
When a patient joins a new practice, the patient registration
form includes the following undertaking:
“How we use your information”
The information you have provided will tests, hospital referrals and
correspondence. Your name and demographic information will be passed
to NHS national services where it be held on the CHI index which is used
for registration and transfer of records. NHS Scotland uses your
information to assist in provision and improvement of NHS services
and when we do this we make sure that the information which
identifies you is separated from your health information and
anonymised. Health condition and treatment information which
could identify you will not be used for research purposes by the
NHS unless you have consented to this.
For more information on how NHS Scotland uses your
personal information visit www.nhsnss.org
Information Governance
• Anonymised data will be the ‘norm’
– Likely to be the case for vast majority of access/releases
– Even when data linkage occurs (e.g. with national
secondary care datasets)
– Explicit patient consent required where justifiable and
authorised need to release identifiable data to customers
• Disclosure control
• Patients can opt-out of any of their identifiable data being
extracted
– Data will be erased if they opt in and then opt out
– Programme of awareness-raising covering data content,
benefits, controls, how to ‘opt out’
Information Governance
– Safe Haven
• Environment owned and controlled by NSS
– Responsible for ensuring IT infrastructure facilitates
adherence to agreed IG principles
• Strict access control – access to only what is required for an
approved purpose
• Patient identifiers stored separately from ‘payload’
• Pseudonymised ID to link data at individual level within safe
haven
• Ability to link data with other national datasets (if approved)
• User access audit trails
• Adherence to data retention policy
Independent Advisory Group
• Include GP and Patient representation
• To oversee / monitor SPIRE to ensure the IG
principles are adhered to
• Approval of data extractions/linkages and user
access
– Assess the need for patient consent
• Ensuring NSS as the service provider keeps
practices & patients informed of all aspects of the
Service
• Providing a vehicle for participating practices to
influence new developments in relation to the
service.
Data Linkage
• Only if approved by IAG & PAC
• Any linkage required will utilise the NSS Electronic
Data Research & Innovation Service (eDRIS)
– Separation of patient identifiers and payload data
in linkage process
– Production of anonymised data at individual level
– In the very rare occasions where patient
identifiable data are needed for research, explicit
patient consent will be required
– Provision of safe & secure access for researchers
GP Participation Options
• GP practice consent sought prior to any data extract
– Case-by-case basis
– Consent may be to recurring data extraction (e.g.
National dataset)
– Prior notification
– No response = opt-out
– Right to opt out after opting in (data erasure)
– Ability to view content of extracts
– Patient opt-out respect even if GP opts-in
• Participation is voluntary; no payment to practices
Benefits to GP Practices
• Reduced workload associated with data extraction & multiple
requests for information
• Standardised and transparent governance around data
extraction
• Provision of information intelligence e.g.
– practice workload, activity & demographics
– comparative information e.g. referral rates
– QOF ‘drill-down’ or ‘gap’ analysis
– risk stratification
• Potential options:
– Reporting/querying functionality in extract tool
– Create/develop bespoke tools e.g. QOF dashboard
SPIRE Progress Summary
Key Milestones to date
• Outline Business Case signed off
• IG Principles & Arrangements signed off
• Extensive Stakeholder engagement
Next Steps
• Procurement of Data Extraction Mechanism
• NSS IT Infrastructure development
• Set up IAG
• Further develop Communication/Engagement
Strategy
• Identifying ‘pathfinder’ practices
How can I find out more?
Visit:
www.spire.scot.nhs.uk
Email:
[email protected]
Twitter: @SPIREScotland
SPIRE
Questions?