Involving patients in cardiovascular research
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10th March 2023
The NHS Research Scotland Cardiovascular Network, organised two events in 2022 involving patients and members of the public. The aim of these events was to hear first-hand views from cardiovascular patients in Scotland how they want to be involved research.
Here the network provide an overview of the events, the learning and future work to strengthen patient and public involvement activity.
Event 1: May 2022
A one-day national hybrid patient and public involvement event was held in Glasgow for people living with or affected by cardiovascular disease. Run in collaboration with NHS Golden Jubilee and Napier University, it welcomed patients and members of the public attended from across Scotland.
Using a hybrid format extended participation to in-person and online. The event included an interactive programme of specialist talks by Cardiovascular research experts, including patient representatives, public engagement leads, researchers, politicians, senior managers from the Chief Scientist Office and charity partners. Support was provided by a number of charity partners including British Heart Foundation, Heart Alliance, Chest, Heart and Stroke Scotland, Pumping Marvellous, Somerville Foundation and the Scottish Health Research Register and Biobank; SHARE.
Within the interactive programme, two interactive PPI workshops were held, one to explore barriers to patient and public research involvement and one to explore enablers. Each of the workshops comprised two questions.
For the barrier session participants were asked:
- what do you think are the barriers for patients to become in research?
- what do you think is needed to break down the barriers for patients and public to become involved in research?
In the enablers session participants were asked
- what heart diseases do you think we need more research?
- what can we do to help you get involved in research in Scotland?
Throughout the event a number of tools were used to engage with our PPI delegates - Mentimeter was used for interactive questions and to facilitate inclusion of a diverse population British Sign Language (BSL) interpreters signed the sessions and audience interactions, both online and in person.
PPI participants were able to take part in a short, filmed semi-structured interview with a researcher that explored experiences of the day, previous experience of being involved in cardiovascular research and perceptions of barriers, enablers, and benefits in getting involved in research. A graphic artist also captured findings of the day summarising in visual format.
Event 2: November 2022
Hosted at Robert Gordon University in Aberdeen alongside NHS Grampian’s PPI and clinical research team. This was an in-person event and provided a perfect opportunity for patients and members of the public to talk with medical and nursing researchers, and others living with heart disease. The event provided an opportunity for people with cardiovascular conditions, within the North of Scotland who often are residing in remote locations, to be engaged in understanding how research works and how they can influence research which keeps patients central to research.
Themes from ongoing discussions with PPI participants from both these events have been analysed and the NRS Cardiovascular Network is committed to raising awareness of the relevance of PPI activities and create an inclusive model of PPI participation across the cardiovascular research communities. The three top themes from our PPI participants are:
- Engage with under-represented populations by improving the visibility, accessibility and understanding of PPI as part of the research process.
- Articulate the value of PPI in terms of contribution to the research and potential personal benefits to patients.
- Ensure PPI costs in funding are sufficient to provide meaningful and inclusive patient involvement at all stages of a research project.