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Secondary Use of EHR: UK Experience 11 October 2007
Dr Louise Wood Head of Innovation and Industry R&D Relations
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NPfIT: new Government commitment
“To develop the capability within the NHS National IT system to facilitate, strictly within the bounds of patient confidentiality, the recruitment of patients to clinical trials and the gathering of data to support ground breaking work on the health of the population and the effectiveness of health interventions”. Pre-budget statement December 2005. Budget: March 2004
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Develop research specs for:
Interventional clinical trials Surveillance (focus on pharmacovigilance) Observational epidemiology Prospective cohort tracking (June 2006)
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UKCRC R&D Advisory Group to Connecting for Health
Key recommendations: Mandate a common patient identifier Action to improve data quality Make best use of what is already available Federation of databases Communicate the relevance of research to healthcare Engage key stakeholders, inc public Organisation to manage specification and deliver infrastructure UK-wide strategy
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NHS CfH Research Capability Programme
Established September 2007 External Reference Group for Stakeholder input Enabling phase activities: Technical architecture Functional scope Standards Data linkage Information governance Comms & Stakeholder engagement Infrastructure (safe haven)
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Framing for success Top level political support for use of EHR data for research . Research community speaking with ‘one voice’ Detailed specification of user requirements informed by all relevant expertise Incremental approach Build on what is working now Address confidentiality / access issues in parallel with technical issues
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