Information Systems:
Delivering Clinical Research
Richard Corbridge and Bryony Walsh
Supporting research to make patients, and the NHS, better
Who we are – NIHR CRN
• The clinical research delivery arm of the NHS
– Tasked with facilitating research in the NHS
– Providing support to the NHS to deliver research
– Enabling research to be done effectively
• Driving clinical research to happen in NHS England
– By providing the catalyst
– By making the linkages
– Through performance management
Who we are - Informatics
• Delivery of the NIHR Information Strategy is in sight
– Putting the researcher at the centre of the systems
– Putting the patient at the centre of the system benefits
– Making data transparent and accessible is at the
heart of the Government’s 2012 Information Strategy
• Informatics are meeting these challenges
– Supporting the delivery of clinical research
– Linking the concept of taking part in research and
undertaking research
Anatomy of the Enterprise
Helping the NHS to deliver
An evolved approach is required to Clinical Research
The NHS has a prescription for systems that:
• Enable Innovation
• Remove Complexity
• Provide Transparency
The Clinical Research Network is making these systems
a reality
Collect Data
Create Information
RDS
Business Intelligence
Gain Insight
Anatomy of Enterprise (Functions)
Open Data Platform
Raison d’être:
Collecting DATA to create INFORMATION that enables
INSIGHT and therefore delivers BUSINESS
INTELLIGENCE
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Response to the Government’s transparency agenda
Data which is accessible and readable
Data that is ‘linkable’
Data that enables insight
The needle in the Big Data haystack
Higher Quality
Lower Cost
Quicker
Open Data Platform
Central Portfolio Management System
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Enabling performance management of research
locally:
˗ Access to the width of NHS information
˗ Linked to the NIHR national data set
˗ Linked to reference data (organisational,
terminology and clinical)
Seamless data entry:
˗ Recruitment, information and study progress
˗ From within a local system
˗ From a mobile device
National performance management capability:
˗ One research function for the NHS
Reference Data Service
Providing a single source of truth
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Source of common language
Repository of terminology
Single map or parent child organisational
information
Terminology index for clinical research management
Map of clinical coding (UK CRC to READ to
SNOMED to ICD10)
RDS
Feasibility Assessment Tool
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Closing the gap between patients and clinical
research
Improving study delivery with a more accurate and
rigorous feasibility service
Utilising NHS data to find the cohort of participants
to take part in clinical research
Enabling the NHS to provide a reliable promise to
researchers on the number of recruits
Join the debate!
How would you prioritise?
1. Open Data Platform
2. Central Portfolio Management System
3. Reference Data Service
RDS
4. Feasibility Assessment Tool
Future systems to enable
innovative research
Co-developers
Seeing patients as co-developers in how Information
helps to deliver quality research
UK Clinical Trials Gateway involves patients at the
source of clinical trials
Involving patients on an on-going basis
Future systems to enable
innovative research
Social Media
An essential tool for patients to:
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Find Information
Participate in clinical research
Join a common cause
Take control of their care and treatment
Add value to their care
Pilot of
and consideration of how to link to
Future systems to enable
innovative research
Partnership approach
• Ensuring a richer patient experience
• IS not the answer to all issues
• Patients will channel hop ‘to find the best deal’
Enabling solutions like those developed by
to easily link patients to trials and studies
Future systems to enable
innovative research
Patient Confidence
, Privacy, Confidentiality, Outcomes and Quality
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Patients understand the data needs of research
Your health record saves lives
Relationships need nurturing
Considering how the innovations of companies
like
can aid safe and secure access to
information.
Join the debate!
What would you vote for?
1. Co-developers
2. Social Media
3. Partnership
4. Confidence
Final thought…
What other systems does the NHS need to enable
clinical research to be done effectively?
What IS innovation do you think we should
concentrate on?
RDS
… are we looking at an App Store for clinical research?
Helping the NHS to deliver
Richard.corbridge@nihr.ac.uk
Bryony.Walsh@nihr.ac.uk
Supporting research to make patients, and the NHS, better