• Led by the University of Manchester, in collaboration with the UK Renal Registry (UKRR), renal services at three NHS Trusts in England, and NHS England.
  • Aims to enrich national audits and research through integration of patient-reported outcomes.
  • Will examine how best to engage patients, clinicians and commissioners in routine collection of electronic patient-reported outcomes into disease registries, using the UKRR as an exemplar.
  • A three-year project starting in April 2018.

Patient-reported outcomes reflect the personal impact of illness and treatment, as assessed by patients themselves. Having high-quality patient-reported outcome data in disease registries can enrich national audits and research, enhance clinical care and inform commissioning decisions and the redesign of health services. However, routinely collecting these data electronically and on a national scale requires support from patients, clinicians and commissioners.

This project, led by the University of Manchester, aims to engage these key stakeholders in the routine collection of electronic patient-reported outcomes (ePROs). It will use the UK Renal Register (UKRR) as an exemplar, making it the first national audit that can routinely and electronically collect patient-reported outcomes data, alongside clinical data. The project will also produce a blueprint that can inform similar work with other disease registries.

The researchers will explore how renal units can successfully engage patients in ePRO data collection, as part of usual care pathways. This will lead to the design and development of a comprehensive strategy for the UKRR to optimise routine collection of ePROs across patient groups.

Three renal units (Salford Royal, King’s College London and Lister Hospital, Stevenage) will then implement the strategy. Using a mixed-methods approach, the research team will identify and investigate barriers to patient and clinician engagement, and address them as they arise by iteratively refining the strategy.

The findings from this, and interviews with commissioners, will lead to the production of a blueprint, which will provide guidance for other renal units and disease registries on incorporating routine ePRO collection. It will also serve as a guide for the UKRR to roll out ePRO collection more widely across the UK.

Follow this project on Twitter: @HeRC_Farr and @UKRenalRegistry

Contact information

Dr Sabine van der Veer, Research Fellow, Centre for Health Informatics, University of Manchester

Email: sabine.vanderveer@manchester.ac.uk

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