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Secondary Use of General Practice Patient Data
Dr Ralph SullivanNational Clinical Lead for Primary Care
NewHSC IC
GPES& EMIS
GPESE2E
GPESTime-table
MiQuest
Open Data
2
Information governance
New non-departmental public body April 2013
Current Information
Centre
SHA informatics NHS CfH
HSC IC
Data Collectionand Quality
To have leadresponsibilityfor data collectionand assuring the dataquality of those returns
National Data Repository
To be the nationalrepository for dataacross health care,public health and adult social care
Enable data linkage within a strong information governance framework
Better Access
To make data widely available, for use by third parties, and to meet the needs of a multiplicity of customers
To be the national source of Health and Social care information for improving patient care and outcomes
How:
Health and Social Care Information Centre
General Practice Extraction Service
GPES
EMIScentralhostingservices
GPESLVPCS
18
EMIS’ Solution for GPES
Fam Service or
Web
CentralReporting
Service
Extractserver
CC
CC
CGPES IG
Principles
Data Sharing Agreement
A little GPES revision?Information governance definitions
GPES
Patient consent to data disclosure
SecondaryUse
SecondaryUse Patient carePatient care
Data is about identifiable patients
Data is about identifiable patients
Data is effectivelyanonymised
Data is effectivelyanonymised
Patient consent to data disclosureExplicit consent Implied consent
Patient identifiablePatient care
Patient identifiableSecondary
uses
Non-personal data – cannot refuse an
FOI Act request
Effectively anonymisedPatient care
Effectively anonymisedSecondary
uses
Secondary uses of identifiable data
Patient identifiableSecondary
usesExpress patient consent
Permissivelaw
Mandatinglaw
Example:Court order
NHS Act 2006, section 251
HSC Act 2012?
Permissive laws – patients that dissent
Dissent from secondary use of GP patient identifiable data
Dissent from secondary use of GP patient identifiable data
Dissent withdrawn second use of GP patient identifiable data
Dissent withdrawn second use of GP patient identifiable data
9Nu0.XaZ89
9Nu1.XaZ8A
10
New read codes to record patients’ dissent from data disclosure
A little more GPES revision?The “end-to-end” process
GPES
GPESBusiness
Unit
Interpretand define
the customerrequirement
StandardInfo Gov
assessment
IndependentAdvisoryGroup
StandardInfo Gov
assessment
Enquirer
GPSSs
Develops queries and
notifies practices
Practicedatabase
Send toGPSSs
Createdata spec
and comms
Extraction Process
Practice consent to data disclosure
Practicereceives
notification
Practicereceives
notification
GP System Supplierdevelops queries
and notifies practices
Decides to participate
Decides to release data
Enquirer
Runs extract
GP controls data extraction1. Set preferences2. Set specific extract decisions3. Run ad hoc GPES queries
GP controls data extraction1. Set preferences2. Set specific extract decisions3. Run ad hoc GPES queries
GPES Timeline
April 2013
EMIS/G
PES contract
IAG first m
eeting
EMIS first m
ailing
Practice awareness
and training
QO
F first extract
Sept2012
Dec 2011
Mar 2012
EMIS second m
ailing
3
Chair
GPBMA
GPRCGP
GPPHCSG
Laymember
Laymember
Laymember
EthicistInformPHCSG
Secretariat(HSC IC)
Membership
Independent Advisory GroupIndependent Advisory Group
Proceed(subject to minor changes)
Further consideration by the IC or significant changes
Proceed
Proceed(subject to further approvals)
Recommendation options
When will GPES arrive?Our timetable
GPES
GPES Timeline
April 2013
EMIS/G
PES contract
IAG first m
eeting
EMIS first m
ailing
Practice awareness
and training
QO
F first extract
Sept2012
Dec 2011
Mar 2012
EMIS second m
ailing
GPES in the Future
• GPES was initially intended to be a MiQuest replacement using an updated HQL
• That has changed– the plan to use HQL was dropped– now GPES writes a data specification that
GP system suppliers will interpret as system searches
– GPES customers must have a national DH/NHS CB sponsor
• GPES funding set to match national demand
MiQuestThe future
MiQuest
MiQuest users
Ref: MiQuest Usage Report v1.0, NHS Connecting for Health, 5 Dec 2011 (NPFIT-FNT-TO-TAR 0100.01)14
MiQuest components
12
Specify code clusters and logical rules and write query
Specify code clusters and logical rules and write query
Run matching queries on n GP systems
Run matching queries on n GP systems
OUTPUT data in standard format
13
MiQuest process
Define plain English data requirement
Licence for enquirer
free
Access to data is free
Requires remote access
National Health ServiceOpen Data
Open Data
The UK pioneers Open Data
NHS Open DataThe Chancellor’s Autumn Statement 2011 saw three major Open Data announcements in health:
1. Linking primary and secondary healthcare datasets - The NHS IC will provide a service to link primary and secondary healthcare datasets from September 2012.
2. Publishing prescribing data - The Government will publish presentation level prescribing data by September 2012 and additional health and social care datasets by September 2013.
3. Personal data - The Government will ensure all NHS patients can access their personal GP records online by the end of the Parliament.
Will data be re-identified?
6
Extrinsic threat of re-identification1.Is additional information available?2.Is there motivation to re-identify?
Extrinsic threat
Intrinsic vulnerability to re-identification
Co
ntr
ols
De-identification
De-identified data
Potentially identifiable data
Indentifiabledata
Effectively anonymised data
6
xIntrinsic vulnerability to re-identification
Extrinsic threat
De-identified data
Potentially identifiable data
Indentifiabledata
xC
on
tro
ls
De-identification
Data can be disclosed for secondary uses without patient consent if it is effectively anonymised.
FoIA HRADPA
5
FoIA HRADPA
Aggregate dataLarge populationsStatistical disclosure controlPatient level data with strong k-anonymity
Pathology Messaging
• 500 million pathology test results annually• Project: database of all results by 2013• HSC IC role: responsible for national data
collections, repository of national data, data linkage (HSC Act 2012)
• Information governance is crucial
Path lab DTS
Encryption
Encryption
Practice
• Pathology labs• Care pathways• NICE guidelines• Research• Patients
Trusted Data Linkage Service (TDLS)• Set up to serve the data linkage needs of medical
professionals, researchers and industry
Linkage &
de-identification
