A critical reflective analysis of patient and public involvement in a programme of heart failure with preserved ejection fraction research

Abstract

Introduction: There are very few reports of patient and public involvement (PPI) initiatives in cardiovascular disease research and even fewer in heart failure, the eventual end point of many cardiovascular conditions. This report describes and critically appraises a PPI endeavor conducted during a programme of work focused on designing a multi-component diet and exercise intervention for people with Heart Failure with preserved Ejection Fraction (HFpEF). Methods: This is a retrospective analysis and critical reflection of field notes and formal communication documents (produced during PPI meetings, n = 3) and transcripts (produced during workshops, n = 3) collected throughout the HFpEF research programme (PRESERVE-HFpEF). Results: PPI had a substantial effect on this project both in terms of the content of the intervention and on the researchers’ perceptions and skills in conducting meaningful PPI. For example, the dietary interventions envisioned within the intervention (caloric restriction, low carbohydrate and high protein), which were based on a meta-analysis of effects we (the authors) performed, were not deemed to be appealing nor feasible by PPI contributors. Many of the researcher related learning points we identified during the analysis, for example practical arrangements that maximize participation, allowing for more open dialogue and being mindful of scientific biases, were not obvious until they were subjected to an interrogative ‘critical’ process. Conclusions: To build a foundation of good practice and evidence of the potential impact of PPI in cardiovascular disease research, we need further descriptions of the involvement process. This reflection is one of very few reports describing how PPI was enacted in heart failure research and what the impacts were. We hope that it will provide other researchers with some insight into how (or how not to) approach and deliver PPI in their research journey. Clinical trial number: Not applicable. Patient or public contribution: People with heart failure with preserved ejection fraction were involved throughout the lifespan of this project. They participated in the PPI meetings and workshops where the direction of the research was discussed and their opinions and expertise were sought, initially through consultation type methods and later via consultation with co-production overtones. One member (JS) contributed to data analysis and interpretation; and provided critical feedback on emerging ideas and drafts of this report.