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Delivering clinical research to
make patients, and the NHS, better
Is ‘Open Data’ the next ‘Big Data’ and if
it is, how do we do it securely?
Richard Corbridge – CIO, NIHR CRN
1
richardcorbridge.com | @r1chardatron
•  Developing Research Culture
•  Access to Research
•  Increased Participation (Patient and Clinician)
•  Increase industry investment
•  NHS as an international leader
•  Pride in the NHS
•  Health and healthcare improved by research
•  NHS Constitution
Organisation: Background
Commitment
2
637,974 new participants in
research in 2012/13
1,592 new studies 2012/13
744 Life Science Industry
partners to date
10,000 funded NHS staff
work on research
55 Informatics staff and 35
Business Intelligence staff
1.5 Information Security
and Records Management
Resources
Organisation: Background
Scores on the doors
3
TECHNOLOGY and INFORMATION are now more than ever ingrained
in all that is done throughout the world and we must adopt all elements of
them or risk falling behind the KNOWLEDGE curve.
Clinical Research Network - Today
•  Approximately 55 different systems currently in place
•  Around 35 different ways of collating reports
•  6 different topic wide databases
•  Significant bespoke reporting
•  Data debate
•  System based change
Organisation: Background
Current landscape
4
What is OPEN DATA?
The comedy answer is DATA that is OPEN…
But it IS as simple as that…
Open data - data that can be made use of by anyone through
analysis, linkages, and evidence based deliveries.
Real World Data – the Big Data of 2013!
What is Open Data?
Clear Business Intelligence
5
Stakeholders
Lifespan
Scope
Content
Open Data
Policing
Who?
When?
Why?
What?
Rules?
Before broadcasting the data ensure answers to all these questions are in place.
What is Open Data?
Key principles
6
§  Clarity of data – Ensure the clarity
of use.
§  Quality of data – Accuracy of data
to be used by others.
§  Commercial nature of data – Can
all data be used by all ‘customers’?
§  ‘Small Numbers’ – Can linking open
data in small numbers break
confidentiality?
§  Veracity of Open Data – The speed
at which open data is created.
Security of Open Data
Key principles
7
§  Managing the re-use of data.
§  The implications of reputational damage
from the reuse of data.
§  Corporate responsibility for Open Data
§  Policing a code of conduct.
§  Enforcing a results of non-compliance.
§  Trigger for review of Open nature of data.
Security of Open Data
Governance aspects
8
§  Mechanisms for Opening Data are different.
§  Service Management Process in place.
§  Access policies agreed and in statute.
§  Catalogue of users and uses agreed.
§  Understanding of the organisations re-used
data may pass through.
§  Final destination known.
Security of Open Data
Open by design
9
§  Crowd source analysis of Big Data.
§  Data linkage between other Open
Data enabling new insight.
§  Transparency to stakeholders.
§  Data re-use to create information
eco system.
§  Improved data quality through
exposure.
Benefits of Open Data
Open by design
10
For a Rubik’s Cube
There are 43,252,003,274,489,856,000 different arrangements!
From only 6 sides and 3x3 dimensions
But just one that is right!
11
Cubes of data
Think about it?
12
Open Data Platform
Managing the Business Intelligence
Open Data Platform
Managing the Business Intelligence
13
Planned Apps
•  Industry Tracker
•  UKCTG
•  Call-4-Participants
•  Track My Study
•  NHS Confed Data
•  FeAt
•  HLO Reporting
•  Map My Study
•  CSP Database
•  TrialViz
•  Trial Reach
•  DH Dashboard
•  RDS
•  LPMS SoC
Future development
“App Centre”
14
Improving the health and
wealth of the nation by…
•  Tablet Development
•  Opening up our data
through collaboration with
Cancer UK
•  Raising awareness of the
rich information we hold
15
Future development
Collaboration
16
What is Open Data?
Summary
For us we have put in place…
§  Security of data volumes.
§  Governance of big data analysis.
§  Management of Data reputation.
§  Ownership of the derived insight.
Driving the nation to…
§  Be the catalyst for national Open Data standards.
§  Agree Open Data licencing.
§  Create the Open Data Institute.
§  Add to the Open Source cultural shift.
17
For clinical research Open Data is the
answer to the query about securing Big Data.
What is Open Data?
Summary
Is ‘Open Data’ the next ‘Big Data’ and if it is,
how do we do it securely?
Questions ?
18

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Information Security Forum (ISF) Congress 2013

  • 1. Delivering clinical research to make patients, and the NHS, better Is ‘Open Data’ the next ‘Big Data’ and if it is, how do we do it securely? Richard Corbridge – CIO, NIHR CRN 1 richardcorbridge.com | @r1chardatron
  • 2. •  Developing Research Culture •  Access to Research •  Increased Participation (Patient and Clinician) •  Increase industry investment •  NHS as an international leader •  Pride in the NHS •  Health and healthcare improved by research •  NHS Constitution Organisation: Background Commitment 2
  • 3. 637,974 new participants in research in 2012/13 1,592 new studies 2012/13 744 Life Science Industry partners to date 10,000 funded NHS staff work on research 55 Informatics staff and 35 Business Intelligence staff 1.5 Information Security and Records Management Resources Organisation: Background Scores on the doors 3
  • 4. TECHNOLOGY and INFORMATION are now more than ever ingrained in all that is done throughout the world and we must adopt all elements of them or risk falling behind the KNOWLEDGE curve. Clinical Research Network - Today •  Approximately 55 different systems currently in place •  Around 35 different ways of collating reports •  6 different topic wide databases •  Significant bespoke reporting •  Data debate •  System based change Organisation: Background Current landscape 4
  • 5. What is OPEN DATA? The comedy answer is DATA that is OPEN… But it IS as simple as that… Open data - data that can be made use of by anyone through analysis, linkages, and evidence based deliveries. Real World Data – the Big Data of 2013! What is Open Data? Clear Business Intelligence 5
  • 6. Stakeholders Lifespan Scope Content Open Data Policing Who? When? Why? What? Rules? Before broadcasting the data ensure answers to all these questions are in place. What is Open Data? Key principles 6
  • 7. §  Clarity of data – Ensure the clarity of use. §  Quality of data – Accuracy of data to be used by others. §  Commercial nature of data – Can all data be used by all ‘customers’? §  ‘Small Numbers’ – Can linking open data in small numbers break confidentiality? §  Veracity of Open Data – The speed at which open data is created. Security of Open Data Key principles 7
  • 8. §  Managing the re-use of data. §  The implications of reputational damage from the reuse of data. §  Corporate responsibility for Open Data §  Policing a code of conduct. §  Enforcing a results of non-compliance. §  Trigger for review of Open nature of data. Security of Open Data Governance aspects 8
  • 9. §  Mechanisms for Opening Data are different. §  Service Management Process in place. §  Access policies agreed and in statute. §  Catalogue of users and uses agreed. §  Understanding of the organisations re-used data may pass through. §  Final destination known. Security of Open Data Open by design 9
  • 10. §  Crowd source analysis of Big Data. §  Data linkage between other Open Data enabling new insight. §  Transparency to stakeholders. §  Data re-use to create information eco system. §  Improved data quality through exposure. Benefits of Open Data Open by design 10
  • 11. For a Rubik’s Cube There are 43,252,003,274,489,856,000 different arrangements! From only 6 sides and 3x3 dimensions But just one that is right! 11 Cubes of data Think about it?
  • 12. 12 Open Data Platform Managing the Business Intelligence
  • 13. Open Data Platform Managing the Business Intelligence 13
  • 14. Planned Apps •  Industry Tracker •  UKCTG •  Call-4-Participants •  Track My Study •  NHS Confed Data •  FeAt •  HLO Reporting •  Map My Study •  CSP Database •  TrialViz •  Trial Reach •  DH Dashboard •  RDS •  LPMS SoC Future development “App Centre” 14
  • 15. Improving the health and wealth of the nation by… •  Tablet Development •  Opening up our data through collaboration with Cancer UK •  Raising awareness of the rich information we hold 15 Future development Collaboration
  • 16. 16 What is Open Data? Summary For us we have put in place… §  Security of data volumes. §  Governance of big data analysis. §  Management of Data reputation. §  Ownership of the derived insight. Driving the nation to… §  Be the catalyst for national Open Data standards. §  Agree Open Data licencing. §  Create the Open Data Institute. §  Add to the Open Source cultural shift.
  • 17. 17 For clinical research Open Data is the answer to the query about securing Big Data. What is Open Data? Summary Is ‘Open Data’ the next ‘Big Data’ and if it is, how do we do it securely?