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Cardiovascular Network leads pioneering study into improving patient and public involvement
21st January 2025
A pioneering study looking into how best to engage research participants through patient and public involvement (PPI) activity has been published following an event led by the NHS Research Scotland (NRS) Cardiovascular Clinical Network
The paper, entitled ‘Patient and public perspectives of involvement in CV research in Scotland: Heart Engagement And Research Talks’, focuses around barriers and enablers of PPI by drawing on data from the event which brought together patients, researchers, and stakeholders in-person and online.
Among the 10 study authors were Professor Lis Neubeck, Clinical Champion of the Cardiovascular Clinical Network, and Cardiovascular Champion Support Manager, Mary McAuley.
The research team held the one-day hybrid event in Glasgow in May 2022, recognising PPI’s crucial role in shaping meaningful research strategies beforehand, but noting persistent barriers to this form of engagement and seeking ways to overcome them.
It was the first step towards integrating PPI within the Cardiovascular Research Network, and the paper published in The British Journal of Cardiology has now reported the findings.
The day – including in-person and online participation by patients and professionals – was split into talks by CV experts, and two interactive workshops, one to explore barriers to patient and public research involvement and another to explore enablers.
A total of five groups, three in-person and two online, were facilitated by the researchers with each group containing between four and six participants.
Discussing PPI barriers, event participants “highlighted communication challenges, emphasising the need for clear, accessible information about research involvement” while underlining “commitment barriers included costs, travel, and time constraints”.
In analysing PPI enablers, participants told how “feeling valued as research participants was essential, emphasising recognition of diverse experiences”.
They suggested that cardiovascular research should focus on replicating learnings from cancer research in terms of improving the visibility, accessibility and understanding of research.
This, they said, included marketing campaigns targeted outside of healthcare settings to raise awareness and help inform patients and the public about how they could get involved.
Participants further suggested that successfully improving healthcare professional (HCP) education would create a more proactive approach, helping to highlight to patients in simple terms the advantages, ease, and value of taking part in cardiovascular research.
The research team concluded that “holding this event emphasised the importance of PPI in cardiovascular research, outlining communication, commitment, and value as key facets”.
They added: “Meaningful PPI, as exemplified in this study, informs and enhances research quality, underscoring the need for continued investment in patient involvement initiatives.”
It was further found that the hybrid PPI event format, with professional notetakers, British sign language (BSL) interpreters, and moderators on hand, “facilitated broader participation”.
“Hybrid events enhance inclusivity but demand careful planning,” the study noted.
Professor Neubeck said: “Cardiovascular disease is the leading cause of death and disability globally, and alongside associated circulatory conditions, makes for the most common cause of premature death in the UK.
“In Scotland, it is estimated that 700,000 people are living with cardiovascular disease, resulting in NHS costs of approximately £800 million per year.
“Research has been critical to improving cardiovascular outcomes over the past three decades and our hybrid PPI event helped to better understand first-hand what patients in Scotland need from research and how they want to be more meaningfully involved.”
She added: “This means a more collaborative approach — from commenting on study design and implementation of research to reviewing study information and improving participant readability.
“Fundamentally, we found that participants want accessible communication, but also to feel valued as a research participant, and that more needs to be done to raise awareness of the personal relevance of PPI activities.
“They also want to see better engagement with underrepresented populations by improving the visibility, accessibility and understanding of PPI as part of the research process.
“PPI events such as this provide important, safe, and supported spaces for public, patients, and researchers to meet, network, and explore solutions together.”
