• 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.
  • This project began in April 2018 and has been extended to run until August 2022.

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 across stakeholder groups, including 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 roadmap to inform a strategy for rolling out routine renal ePRO collection at a national level.

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. They will also gain a more in-depth understanding of the needs of specific patient groups who have lower levels of engagement with ePRO collection,and explore what materials and resources are available to offer these groups additional support.

The findings from this, and from interviews and a national meeting with representatives from stakeholder groups, will lead to the production of the roadmap. The roadmap will present recommendations for national stakeholder groups and renal service providers on how to scale up renal ePRO collection across units in the UK.

Follow this project on Twitter: @HeRC_Tweets

Contact information

Dr Sabine van der Veer, Senior Lecturer, Centre for Health Informatics, University of Manchester

Email: sabine.vanderveer@manchester.ac.uk

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