Research Article: ‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory

Date Published: May 14, 2019

Publisher: Public Library of Science

Author(s): Julia Keenan, Fiona Poland, Jonathan Boote, Amanda Howe, Helena Wythe, Anna Varley, Penny Vicary, Lisa Irvine, Amander Wellings, Alessandra Solari.


Patient and public involvement (PPI) is a requirement for UK health and social care research funding. Evidence for how best to implement PPI in research programmes, such as National Institute for Health Research (NIHR) Collaborations for Applied Health Research and Care (CLAHRCs), remains limited. This paper reports findings from an action research (AR) project called IMPRESS, which aims to strengthen PPI within CLAHRC East of England (EoE). IMPRESS combines AR with Normalisation Process Theory (NPT) to explore PPI within diverse case study projects, identifying actions to implement, test and refine to further embed PPI.

We purposively selected CLAHRC EoE case study projects for in-depth analysis of PPI using NPT. Data were generated from project PPI documentation, semi-structured qualitative interviews with researchers and PPI contributors and focus groups. Transcripts and documents were subjected to abductive thematic analysis and triangulation within case. Systematic across case comparison of themes was undertaken with findings and implications refined through stakeholder consultation.

We interviewed 24 researchers and 13 PPI contributors and analysed 28 documents from 10 case studies. Three focus groups were held: two with researchers (n = 4 and n = 6) and one with PPI contributors (n = 5). Findings detail to what extent projects made sense of PPI, bought in to PPI, operationalised PPI and appraised it, thus identifying barriers and enablers to fully embedded PPI.

Combining NPT with AR allows us to assess the embeddedness of PPI within projects and programme, to inform specific local action and report broader conceptual lessons for PPI knowledge and practice informing the development of an action framework for embedding PPI in research programmes. To embed PPI within similar programmes teams, professionals, disciplines and institutions should be recognised as variably networked into existing PPI support. Further focus and research is needed on sharing PPI learning and supporting innovation in PPI.

Partial Text

Patient and Public Involvement (PPI) is health research policy in the United Kingdom (UK) and internationally [1–4]. PPI in research is defined as research undertaken with, or by, patients and the public, rather than research which is on, for, or about them [5]. A contrast is drawn between involvement and participation in research; those involved are not participants in the research but rather advisors, co-researchers or co-applicants. Researchers and PPI contributors can work together during various phases of the research cycle: to prioritise, plan, conduct and disseminate research. PPI is also practiced in setting research priorities and in funding allocation.

The objectives of this first action research cycle of IMPRESS were to explore the experience of PPI within CLAHRC EoE, to identify barriers and enablers to “fully embedded, active and comprehensive PPI” in this research programme and to determine what is entailed in “normalising” a programme of PPI across a CLAHRC. The overall aim being to build knowledge and evidence but also build a framework to identify actions to improve research practice concerning PPI. Staley [16](2015) suggests that the impact of PPI is both highly context-dependent and reliant on the quality of specific PPI processes implemented. Our findings show that despite programme wide policy support and dedicated resource for PPI within the CLAHRC EoE programme and evidence of good PPI practice, PPI is not yet ‘fully embedded, active and comprehensive’ within this CLAHRC. The main facilitators and barriers to making sense of PPI, buying into PPI, doing PPI and appraising PPI within programme projects being identified in the summary sections above.

Informed by NPT, this initial phase of the IMPRESS action research study explored in-depth, the experiences of researchers, PPI contributors and PPI stakeholders in the context of their mutual involvement in a regional programme of applied research. This approach has helped identify various barriers and facilitators to embedding PPI in a research programme and areas for future action to develop this further.