'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

• Published in: PloS one 2019-05, Vol.14 (5), p.e0215953-e0215953
• Main Authors: Keenan, Julia, Poland, Fiona, Boote, Jonathan, Howe, Amanda, Wythe, Helena, Varley, Anna, Vicary, Penny, Irvine, Lisa, Wellings, Amander
• Format: Article
• Language: English
• Subjects: Biology and Life Sciences; Business metrics; Case studies; Consultation; Data processing; Embedding; Finance; Handbooks; Health; Health sciences; Health services; Health Services Research; Humans; Knowledge; Medical research; Medicine and Health Sciences; Methods; Patient Participation - statistics & numerical data; Patient safety; People and places; Public involvement; Public participation; Qualitative analysis; Qualitative research; Research and Analysis Methods; Research design; Research funding; Research methodology; Research projects; Researchers; Sailing; Science Policy; Ships; Sleep; Social Sciences; Stakeholder Participation; Triangulation
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0215953

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.