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Engaging with the clinical data transparency initiative: a view from the National Institute for Cardiovascular Outcomes Research (NICOR)
  1. Chris P Gale1,2,
  2. Clive Weston3,
  3. Spiros Denaxas4,
  4. David Cunningham5,
  5. Mark A de Belder6,
  6. Huon H Gray7,
  7. Roger Boyle5,
  8. John E Deanfield5,
  9. on behalf of the NICOR Executive
  1. 1Centre for Epidemiology and Biostatistics, University of Leeds, Leeds, UK
  2. 2Department of Cardiology, York Teaching Hospital NHS Foundation Trust, York, UK
  3. 3College of Medicine, Swansea University, Swansea, UK
  4. 4Clinical Epidemiology Group, University College London, London, UK
  5. 5National Institute for Cardiovascular Outcomes Research, University College London, London, UK
  6. 6Cardiothoracic Division, The James Cook University Hospital, Middlesbrough, UK
  7. 7Departmen of Cardiology, University Hospital of Southampton, Southampton, UK
  1. Correspondence to Professor John E Deanfield, National Institute Cardiovascular Outcomes Research, National Centre for Cardiovascular Prevention and Outcomes, 170 Tottenham Court Road, London W1T 7HA, UK; j.deanfield{at}ich.ucl.ac.uk

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The availability of centrally analysed, comprehensive outcome data from cardiovascular audits has underpinned the success of the National Service Framework (NSF) for coronary heart disease1 in achieving a substantial reduction in morbidity and mortality from cardiovascular (CV) disease in the UK.2

The UK Government is now intending to implement ‘transparency initiatives’ within the National Health Service (NHS)—reporting outcomes for General Practice, hospital complaints and satisfaction surveys and healthcare team performance.3 Routine (‘raw’) clinical data will be made publicly and commercially available, so that independent parties will have open access to anonymised data relating to all recorded components contributing to the quality of CV care. The coalition Government has promised ‘an openness about results that we have never experienced before’, in an attempt to ‘reform public services, foster innovation and empower citizens’.3 While there is likely to be little opposition to policies aimed at improving quality of care for patients with CV disease, strategies for managing national clinical data present a number of challenges if they are to impact on the drive towards further reducing the burden from CV disease in the UK. The National Institute for Cardiovascular Outcomes Research (NICOR) runs a programme that engages with aspects of the Government's agenda. It addresses the particular challenges of managing large complex clinical datasets, while minimising any unintended consequences of releasing raw data into the public domain.

The National Institute for Cardiovascular Outcomes Research (NICOR)

NICOR is an umbrella organisation for a number of national registries created by professional CV societies. It is based at University College London (UCL), importantly offering linkage of national cardiovascular databases and the potential for increased international comparative data analysis. Established by Professor Sir Bruce Keogh, in 2006, it is currently led by Professors Sir Roger Boyle and John Deanfield, …

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