Project title:

Patients and service users as research partners: what models work best to improve patient experience in long term conditions services? (PatIents as Partners to Improve long term coNditions services – PIPPIN)

Type of research:

Applied research

For the lay summary, please click here 

Background & Scientific Rationale:

Patient and Public Involvement lies at the heart of current health policy (Department of Health, 2010a) and is seen as an essential element in ensuring patient safety, improving health outcomes and patient experience (Department of Health, 2010b), and enhancing research quality and outcomes (Howe et al., 2010). While there has been a paradigm shift towards partnership working with patients exemplified by the Co-creating Health approach (Health Foundation, 2008), there continues to be a dearth of evidence about the impact of PPI on health research (Staley, 2009) and within health service design and development (Staniszewska et al., 2008). There are a variety of approaches to PPI ranging from passive consultation to proactive participation as partners (Tritter and McCallum, 2006). While the latter exemplifies the paradigm shift to partnership working between patient, clinician and researcher, it also requires a cultural change and the development of new skills with associated resources to enable this. As a relatively resource intensive intervention, there is a need to evaluate what models of PPI have the most impact and in what circumstances. Patient experience is seen as a major indicator of care quality (Ford et al., 1997, Francis, 2013) and drawing on patient experience through PPI has been identified as a way of improving services (NHS Institute for Innovation and Improvement, 2009).

Research questions / aims:

This research aimed to understand what models of PPI in research lead to improved patient experience of chronic disease services.  Specifically, the aims were to:

  • Evaluate changes in patient experience following i. involvement within a participatory framework with patients and services users as “partners” or ii. involvement within a consultative or advisory framework.
  • Explore patient and clinician experience of working within the different models of PPI.
  • Identify enablers and barriers to participatory working aimed at improving the patient experience of long term conditions services.
  • Identify resource use within each model of PPI to provide PPI cost estimates.

Proposed methods:

A realist evaluative framework was used to determine what models of PPI work best to improve services for people with chronic disease and in what circumstances.

PPI involvement:

Patients and the public who had been involved in the Self-Management And Dialysis Evaluation (SELFMADE) study and collaborative group, continued as partners in PIPPIN. The study team drew on established links with patient groups including the Lister Kidney Foundation and the National Kidney Federation and worked with them throughout this project. Patients and members of the public received support and training through the University of Hertfordshire Public Involvement in Research Group (PIRg), which had also been involved in SELFMADE*. The team also worked in partnership with other patient organisations with whom they established links  (eg Diabetes UK, Breathe Easy) so that the outputs from this project could be applied to other long term condition services and diverse populations.

*The SELFMADE project was funded by the NIHR for three years, and aimed to promote a new renal failure nursing role in East and North Hertfordshire. It was a joint study between the University of Hertfordshire and The East and North Hertfordshire NHS Foundation trust.

A lay researcher was an integral part of the small research team to ensure meaningful public involvement at every stage. The PIRg also acted as an external reference group and in particular advised and guided the research protocol and lay summary. The advisory group had equal membership of renal professionals, renal patient representation, PPI user group representation and British Kidney Patient Association patient advocacy representation. The advisory group has had a continued input into the process and the on-going development of the research process, including dissemination and the final report for the funding body.

The lay researcher took the leading role in the qualitative data analysis for the PIPPIN study. The thematic analysis of patient and staff interviews as well as focus groups identified issues to be incorporated into subsequent interviews and yielded a more focussed, patient centred perspective. Analysis identified four key themes in relation to patient/staff experience of involvement

Key findings and outputs 

The continuing PPI throughout the study demonstrably influenced the research direction and outcomes. Key enabling processes within this partnership were built on an ethos of genuine commitment and equality, with early identification of support and training needs. The results of this collaborative approach suggest an essential role for patients/lay researchers within long term conditions research.

Phase 1:

  • Planned publication: Understanding the extent of shared care among haemodialysis patients: A cross-sectional survey using the Patient Assessment of Chronic Illness Care (PACIC) tool – to be submitted to Journal of Renal Care.

Findings: The PACIC tool has the potential to be used to provide a comprehensive patient perspective.

The lead author of this paper is Sue Marks the co-researcher on the project.

Key Findings: The role of a co-researcher is very different to the role of being an advisory group member in terms of breadth and depth. The co-researcher role evolved over time, flexibility was needed, a need for on-going training and support and a large time commitment. The paper aims to encourage others to undertake this role.

Phase 2: Analysis of the qualitative interviews with patients and staff at two renal units.
The interviews will be analysed using thematic analysis and NVIVO and the main themes will be identified. Analysis will explore the different views of patients and staff regarding self-management, self-care and patient involvement.

The analysis and write-up will form the basis of a publication on models of patient involvement in renal units, addressing a current gap in the literature. The article will also document the strong PPI element of the study, with the role of the lay researcher in the data analysis being integral. This will also address a gap in the nephrology field where there are few examples of PPI in research.

For further information on this project, contact Professor Fiona Poland email: 

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