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

Abstract

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). 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). 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. 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. Not applicable. 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. In this paper the researchers think back on the patient involvement activities they have conducted as part of a study that tried to create a new diet and exercise intervention for people with Heart Failure with preserved Ejection Fraction (HFpEF). HFpEF is the most common type of heart failure. It can be very difficult to diagnose and manage as the symptoms impact on quality of life and there are few treatment options. There is some evidence that suggests combined diet and exercise interventions can be beneficial to people with HFpEF, although the optimal combination remains unclear.People with HFpEF who had been taking part in an ongoing study, were asked to contribute to the development and design of a combined diet and exercise intervention called PRESERVE-HFpEF. The researchers explain what they did to engage with people with HFpEF to shape the research idea and design of the intervention, and consider how their approach could be improved. They also explore what other researchers have said about involvement, and use this to show the weakness of their methods, or where they could have approached things differently.This story of patient involvement shows how important good and meaningful involvement is, and the researchers explain how they missed opportunities to identify a very important belief that patients with HFpEF held. This belief was that diet intervention styles identified by a study of studies (meta-analysis), did not appeal to them and they would be unlikely to either take part in, or stick with, any future intervention that included these designs. This viewpoint, once realized, led to a complete change to the intervention. The contributor informed design focused on recommendations for small changes in shopping and eating habits that could be more easily achieved within everyday life, rather than having to follow complicated and detailed diet prescriptions.