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Information Systems: Delivering C linical R esearch. Richard Corbridge and Bryony Walsh. 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

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Information Systems: Delivering C linical R esearch


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    1. Information Systems:Delivering Clinical Research Richard Corbridge and Bryony Walsh

    2. 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

    3. 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

    4. Anatomy of the Enterprise

    5. 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

    6. Anatomy of Enterprise (Functions) Collect Data Create Information RDS Business Intelligence Gain Insight

    7. Open Data Platform Raison d’être: Collecting DATA to create INFORMATION that enables INSIGHT and therefore delivers BUSINESS INTELLIGENCE • Response to the Government’s transparency agenda • Data which is accessible and readable • Data that is ‘linkable’ • Data that enables insight

    8. The needle in the Big Data haystack Higher Quality Lower Cost Quicker

    9. Open Data Platform

    10. Central Portfolio Management System • 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

    11. Reference Data Service • Providing a single source of truth • 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

    12. Feasibility Assessment Tool • 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

    13. Join the debate! RDS • How would you prioritise? • Feasibility Assessment Tool • Open Data Platform • Central Portfolio Management System • Reference Data Service

    14. 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

    15. Future systems to enable innovative research Social Media An essential tool for patients to: 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

    16. 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

    17. Future systems to enable innovative research Patient Confidence , Privacy, Confidentiality, Outcomes and Quality 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.

    18. Join the debate! What would you vote for? Co-developers Social Media Partnership Confidence

    19. Final thought… RDS 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? … are we looking at an App Store for clinical research?

    20. Helping the NHS to deliver Richard.corbridge@nihr.ac.uk Bryony.Walsh@nihr.ac.uk