We are family’: embedding patient and public involvement (PPI) in a collaborative research programme: lessons from the IMPRESS study

Fiona Poland, Jonathan Boote, Amanda Howe, Julia Keenan, Helena Wythe, Anna Varley, Amander Wellings, Penny Vicary

Research output: Contribution to conferencePaperpeer-review

Abstract

The policy drive for PPI in health and social care research is informed by evidence that good PPI enhances: wider engagement, participant recruitment, retention, ethical coherence and intervention adherence. A regional network of NIHR ‘Collaborations for Leadership in Applied Health Research and Care’ (CLAHRCs) brings together local NHS services providers and commissioners, universities, stakeholder organisations to conduct applied health research and translate findings into improved patient outcomes. PPI has great potential to positively impact such aims and CLAHRCs also offer ‘natural testbeds’ of multidisciplinary, multi-methodological programmes to research PPI. Implementation theory suggests PPI will encounter disjunctures of communication and “fit” with existing values and practices when “normalising” PPI within such programmes.
The IMPRESS study was a mixed methods, action research study of PPI implementation, informed by Normalisation Process Theory (NPT). PPI was embedded in all stages of IMPRESS’s design and organisation. Findings are presented from the qualitative phase of the research: interview (n= 37) and focus group (x3) data, and documentary analysis across 10 research project case studies. Analysis identified barriers and enablers to active and comprehensive PPI. This crosscut several levels: methodological/disciplinary, host institution, programme and highlighted that relationships need nurturing through finding ways to support and value newer members in the research family. We discuss implications for CLAHRCs and similar programmes, in the context of existing evidence and recent guidance and propose actions for developing shared learning and reflexive monitoring to better evidence the design and impact of PPI in research contexts where time is a challenged resource.
Original languageEnglish
Publication statusPublished - 13 Jul 2016
EventHealth Services Research UK - Nottingham, United Kingdom
Duration: 13 Jul 201614 Jul 2016

Conference

ConferenceHealth Services Research UK
Country/TerritoryUnited Kingdom
CityNottingham
Period13/07/1614/07/16

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