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Developing a UK registry to investigate the role of cardiovascular magnetic resonance (CMR) in patients who activate the primary percutaneous coronary intervention (PPCI) pathway: a multicentre, feasibility study linking routinely collected electronic patient data
  1. Rachel C Brierley1,
  2. Maria Pufulete1,
  3. Jessica Harris1,
  4. Chiara Bucciarelli-Ducci2,
  5. John P Greenwood3,
  6. Stephen Dorman2,
  7. Richard Anderson4,
  8. Chris A Rogers1,
  9. Barnaby C Reeves1
  1. 1 Clinical Trials and Evaluation Unit, University of Bristol, Bristol, UK
  2. 2 NIHR Bristol Cardiovascular Research Unit, Bristol Heart Institute, University of Bristol, Bristol, UK
  3. 3 Multidisciplinary Cardiovascular Research Centre and Leeds Institute of Cardiovascular and Metabolic Medicine, University of Leeds, Leeds, UK
  4. 4 Department of Cardiology, University Hospital of Wales, Cardiff, UK
  1. Correspondence to Dr Maria Pufulete; maria.pufulete{at}bristol.ac.uk

Abstract

Objectives To determine whether it is feasible to set up a national registry, linking routinely collected data from hospital information systems (HIS), to investigate the role of cardiovascular magnetic resonance (CMR) in patients who activate the primary percutaneous coronary intervention (PPCI) pathway.

Design Feasibility prospective cohort study, to establish whether: (1) consent can be implemented; (2) data linkage and extraction from multiple HIS can be achieved for >90% of consented patients; (3) local data can be successfully linked with hospital episode data (Hospital Episode Statistics, HES; Patient Episode Database for Wales, PEDW) for >90% of consented patients and (4) the proportion of patients activating the PPCI pathway who get a CMR scan is ≥10% in hospitals with dedicated CMR facilities.

Participants Patients from four 24/7 PPCI hospitals in England and Wales (two with and two without a dedicated CMR facility) who activated the PPCI pathway and underwent an emergency coronary angiogram.

Results Consent was successfully implemented at all hospitals (consent rates ranged from 59% to 74%) and 1670 participants were recruited. Data submission was variable: all hospitals submitted clinical data (for ≥82% of patients); only three hospitals submitted biochemistry data (for ≥98% of patients) and echocardiography data (for 34%–87% of patients); only one hospital submitted medications data (for 97% of patients). At the two CMR centres, 14% and 20% of patients received a CMR scan. Data submitted by hospitals were linked with HES and PEDW for 99% of all consented patients.

Conclusion We successfully consented patients but obtaining individual, opt-in consent would not be feasible for a national registry. Linkage of data from HIS with hospital episode data was feasible. However, data from HIS are not uniformly available/exportable and, in centres with a dedicated CMR facility, some referrals for CMR were for research rather than clinical purposes.

  • information technology
  • adult cardiology
  • cardiovascular imaging

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors RCB: conducted the study and compiled a list of the main study challenges. MP: designed and conducted the study and wrote the manuscript. JH: conducted the data linkage for three of the four hospitals, conducted the statistical analysis and drafted some sections of the manuscript. CB-D: conceived the overall feasibility study and provided clinical and CMR expertise. JPG: principal investigator at one of the recruiting hospitals, provided cardiology and CMR expertise. SD, RA: principal investigators at one of the recruiting hospitals, provided cardiology expertise. CAR: provided guidance with respect to the statistical analysis. BCR: chief investigator with overall responsibility for the study, designed the study and provided strategic direction with interpretation of study results. All authors read and approved the final version of the manuscript.

  • Funding This study is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research (HS&DR 11/2003/58). The British Heart Foundation and NIHR Bristol Biomedical Research Unit for Cardiovascular Disease funded some staff time (MP, JH, CBD, CAR, BCR).

  • Disclaimer The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

  • Competing interests JPG has received a research grant from Philips Healthcare.

  • Patient consent Not required.

  • Ethics approval Ethical approval for the study was obtained from National Research Ethics Service (NRES) Committee South West-Central Bristol.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Anonymised individual patient data (excluding hospital episode/vital status linked data) can be made available for secondary research, conditional on assurance from the secondary researcher that the proposed use of the data is compliant with the MRC Policy on data preservation and sharing regarding scientific quality, ethical requirements and value for money. We are prevented from sharing hospital episode data/vital status data under our data sharing agreement with NHS Digital. Please contact maria.pufulete@bristol.ac.uk to discuss any data requests.

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