• 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

About this programme

Programme

Insight Research Programme 2017

This £1.6 million programme is funding five projects that will research the development and use of...

You might also like...

Newsletter feature

Five key insights on COVID-19 and adult social care

Here we highlight five key insights from two new briefings on COVID-19 and social care.

Briefing

Adult social care and COVID-19: Assessing the impact on social care users and staff in England so far

Our analysis on the scale of the impact of COVID-19 on social care in England during the first phase...

Blog

Digital and data-driven innovation: supporting it to thrive

Arne Wolters explores how digital and data-driven innovation can be used in ways that maximise the...

Kjell-bubble-diagramArtboard 101 copy

Get social

Over 700,000 patients served by GPs at high risk of COVID-19 could be left without access to face to face GP appoin… https://t.co/wZJJPCuRCn

Follow us on Twitter
Kjell-bubble-diagramArtboard 101

Work with us

We look for talented and passionate individuals as everyone at the Health Foundation has an important role to play.

View current vacancies
Artboard 101 copy 2

The Q community

Q is an initiative connecting people with improvement expertise across the UK.

Find out more