NHS-HE Forum 18th Nov

Overcoming key data sharing challenges for research
NHS-HE Forum 18th November 2015
Michael Abtar
Agenda
• A closer look at Big Data and IG
• The NIHR-HIC and section 251
• There has to be a smarter approach
“Big Data”
IG challenges within Data
Warehousing
Data Data Everywhere
Core I&T
Clover
Oracle
DAMEWARE
EASY SITE ICCM
Medicdoe
Chose & Book
RICOH
Printer Monitor
PAS
Trust
Apps
Occ
Med
Firewall
SQL
Compucare
AD
REG
REG
ICNET
REG
Ventilator
CV-Enterprise
PATH
Filters
AIMS
PMI-TWINTIP
SQL SERVER
REG
EPR
Agfa-RIS
Modalities
SiEMENS
PHILIPS/
GE
AGFA
MRI PACS
PCDMS
REG
MEDICUS
VISI Download
ECG
Holter
Cardiology
RACPC
Occupational
Asthma
BRONSCOPY
Sensitive
Data Mng
REG
Patient Letter
Mail Merge
congenital
Haemo-dynamic
CathLab
Primary Ciliary
Dyskinesia
Ext LABS
EPR
SQL
CF TRUST
Counter GP
FraudSurgeries PCT
Office
Oracle
Open Exeter CFH
New Genetic
Lab NGS
C-BRU
REG
REG
SentrySuite
REG
BRU Web
JAEGAR
Pulmonary
Wave Form
Amazon
WebServices
CardioDB
Respiratory
Physiology
SUS
TRANSPORT
FUNERAL
PROVIDERs
DIRECTORS
REG
estate
Harefield St Georges
Health Centre
Hammersmith
DoH
Item Tracker
InterSystem
Grants
BeeHive
REG
DATA/SAMPLES
Dubai, US ??
Research
E-CRF
QFM
catering
MenuMark
EPR
JAEGAR
Hyperventilation
Research SANDHILL
Accomodation
L&D
BLICK ASTROW
PLUS
HAMS
RMA
Evovle
AD
E-Conferencing
T-Doc
Blood Gas
Analysers
EPR
B/u
Oesophageal
Eceptionist Studies
Fitness To Fly
RapidCOM
Hemocue
Haemoglobin
SQL
CUSTOM
PROCESS
SPSS
EP
R
MRI
CMR Reporting MRI PACS
Via Integration Tube
RMA
XML
Uploader
EPR
Conflict of
Interest
Charing Cross
UCLH
Synetics
Taxi
Bookings
Home
Connections
GENETICS
PROCESSES
BRU
MySQL
Workstations
CORONERS
Marsden
UK Health
NHS
Centers Suppliers
NICOR
Med
Co/Am Luton and
Surv Dunstable
Medico-Legal
NSTS
Imperial
Spirometry
Trust
Booking
File Library FeesPENTAX
JINET
Manager
Reports
TELEVANTAGE
catering
CAPS
CANCER WAIT
DID
TIMES
HPA
RCP
CCMDS
Oracle
Parking Bay
Bookings
IEP
NCE POD
Lung Function
Admin
REG
TomTec
PICANET
MACH4 ROBOT
PC-Interface
Clover
REG
PAS
MEDTRAC
PortaCount
JAC
SQL
SOMNOMEDICS
DOMINO
PTS
REG
ASCRIBE
Requirements
& Actions
Clinical
Guidelines
Trust
Survey
FitPlus3
Oracle
EASY SITE
CCAD
Mi dataBank
AAW Temperature
Monitoring
DATIX
REG
Transplant
Waiting List
Work Year
Plan
AD
APPT
Ealing
UKT
RATAR
REG
HERMES-NM
PACS
Wexham
Dept / Ward
Survey
Clinical Audit
Register
Phone
Book
External
Medcon
NHS-CRS
Identity Agent MAPS
COHORT
Broker
Nuclear Medicine/
Bone Densitometry
ADAPT My ID Client
MY - ID
ESR
LF TESTS
qDOC
MEDCON
Broker PACS
INVOICE
CIRIS
HR Confirmation of
Employment
IPLAN
Pharmacy
Pdf - Echo
DbForm
HR Payroll
HR Staff Changes
INTUITION
Chart RunnerClinical Gov
REG
Business
Objects
HR
ANGIOGRAPHY
GE/PHILIPS/SIEMENS
AGFA
PACS
REG
PRISM CRF
Clover
Radiology/Imaging
Clover
Philips
Central
Monitor
DbFax
REG
DbBACS
CostMaster Trust to Trust
QLIK VIEW
STAFF
Quality&Safety
Pulmonary
Rehab –
Research/
Oxygen
REG
DbMail
E-Financials
APPT
XCELERA
PACS
ICIP
Workstations
IPM Q-Pulse
CV-RhapsodyQuality Mng
PATH
OE-OCD
Critical Care
Min DS
Clover
Xcelera
REG
Diet
Labels
Oracle
DbArchive
REG
REPORT
BED SIDE
MONITOR
ICIP
REG/ADT
REG
REG
eProc
Helpdesk
DbScanner
High Cost
Procedures
DAWN
Anti Coagulant
PAS
Clover
Oracle
ADT/REG
CLOVERLEAF
Clinical
Availability
Drug
Exclusions
Consultant
Fees
Aperio
Clinical Engineering
MIS-ORACLE
eProc Supplier
Checker
DbCapture
SLAM
PathManage
PATH
Blood Gas
Analysers
Oracle
PATH
PACENET
Mixed Sex
Accmd.
OE-ORACLE
Organ
Retention
Urinalysis
Other NPT
INR
ORDERS/REPORTS
Delayed
Discharge
Business
REG ClinicalObjects
eProc Invoice
Query
E-Procurement
HL7
MICRO
RADIANCE
ACQUIRE
ANGLIA ICE
REG
REG
HAMS
2D Barcode
PAS
Emergency
Integration Tube
REG
Medical
Records
PACING DOC
REG/ADT
Blackberry
SWORD Retained
ScannerOrgan Database
ICE Request
On Call
Helpdesk
SolarWinds
Address
Mgr
Private
Patient
Enquiry
Manual/
Auto Upload
Infoflex
SPINE-SCR
Epr PRINT
E-Policy
Omnivista Orchestrator
Alcatel
Blood Glucose
Meter
Electrolyte
EPR
DS
REG
REG
WINPATH
REG
MED
RAISERS EDGE
Fridges/ Blood Track
Kiosks
BT Analysis
DiaMed Gel
Station
PATH
RIS
ADT
SF4
SQL
REG
REG
Oracle
DocMan
Transport
Book
REG/ADT
ARX-PYXSIS
Barcuda CABINETS
IT Network
EDT HUB
PATS
Disk
Keeper
(intranet)
Xenu
Broken Links
60k web
Links
Finance
Clover
CSV
Dual
Fibre/
Homed/
Power/Site
test
Active Directory
Evault
Labs
ORDERS/REPORTS
X-Docs
REG/ADT
Active
Admin
CMR
DICOM
MATLAB
Access Connectors
Simplectic
600-800
publications/
year
PeerRe
view
Pubs
ROAD
External Flow
IRAS
DoH
Tracking
Db
External Systems
The “Big Data” Challenge
A vision for a Single Information Platform
Integrated Digital Care Record (IDCR)
Add Data Handling Capabilities
Capture
Analyze
Act
Vendor
Neutral
Image
Archive
(VNA)
DICOM
XUA
XDS
Clinical Data
Warehouse
XCA
Collaborate
Others
XDW
PACS
RESTful
EDM
HL7
EPMA
XDR
5
Researchers, Clinicians,
Performance, Audit
Operational Systems
ICIP
EPR
RIS … etc
SAS Visual Analytics
• Dashboards • Exploratio
• Web Portal
n
• Reporting
Timely
• Profile
• Integrate
• Data
• ETL
Quality
• Standardise
Clinical Data
Warehouse
Accessible
Secure
SAS Data
Management
Accurate
PAS
SAS Data
Mining
•
•
•
•
Predictive modelling
Segmentation /Cohort
Association analysis
Sequence of Events
SAS Text Analytics
• Search, Classify
• ICD10 & SNOMED Decode
• Interpret, Analyse
Unstructured
Data
Data Stewards,
Data Managers
Data Miners, Clinical
Analysts, Researchers
6
Copyright © 2010 SAS Institute Inc. All rights reserved.
The Power of “Big Data”
•
•
•
•
•
•
95% of Trust data – 900,000,000 facts on >1m patients -  5tb
Single view of the patient across multiple systems
Immediately identify patient cohorts for research
Interrogate unstructured data – clinic letters, MDTs
Visual performance dashboards – capacities, performance against target
Patient and procedure level costing, referrals management, predictive ICU
bed stays, patient pathway analysis, predictive high cost patients,
cancelled operations, diagnosis vs outcomes
Drive Performance and Strategic Direction for Trust
7
IG Challenges within the CDW
Innovation
Development
Research
Strategy
Data Governance
Data Quality
Access Controls
Data governance is like going to the dentist:
Everyone has to do it - but few people really enjoy the process.
8
Access Considerations
• Primary use of the data – Direct patient care
• Secondary use
–
–
–
–
Research
Mandatory audit and reporting
Service Evaluation
Corporate
The Difficult Areas
• Native access to data source – is this appropriate
• Dual role clinician and researcher
• Cloud vs hosted - EU/US Safe Harbour
9
Anonymisation
• Sensitive and confidential data items are items which can be used
to uniquely identify a person.
• In order to protect personal privacy, free access cannot be given to
data which can be used to identify an individual.
• Sensitive data items include;
•
•
•
•
•
•
•
Name
Address
Date of Birth
NI Number
NHS Number
Hospital number
NOK
• Items are included even if they can only be used in combination
with other items, to identify an individual.
10
How do we anonymise
1. Minimise the number of tables containing sensitive data
items
•
Only the Address and Patient_S tables will contain sensitive data items
2. Protect those tables with database security
•
Although SAS metadata provides security, database security can be used to restrict access to
the data from all tool sets, not only the SAS tool set.
3. Provide a “single view of the patient” through nonintelligent surrogate keys
•
Providing a non-intelligent key (not related to any existing source system key) globally across
all tables in the CDW, provides a powerful “single view of the patient”.
•
Placing the Intelligent and Non-Intelligent keys only on the Patient_S table provides the ability
to reference individuals, but only by those with access to sensitive data.
11
Rising to Dame Sally Davies’ Challenge
5 themes
•
•
•
•
•
acute coronary syndromes
ovarian cancer
hepatitis
renal transplantation
and intensive care
Section 251 for Linking HES, SUS & ONS Data
• Plan your exit strategy
• Ensure robust communications strategy for fair
processing – consider social media, websites,
animations, posters, local radio etc
• Do every thing that is reasonably practicable to
notify data subjects (i.e. patient groups,
community groups, voluntary sector
organisations etc)
• Anonymisation (ensure compliance with ISB 1523
)
We view information governance and technology as
being enablers for better and more integrated care.
Recently worked with
We help to bridge the gap through
• providing clear and
concise advice
• making proportionate
recommendations
• implementing
pragmatic solutions
Michael Abtar
Mob: 07463 808 486
Email: [email protected]
Twitter: @ig_smart
www.ig-smart.com