Vascular patients wanted to help shape future of research

Patients with long-term vascular conditions, including females and those from an ethnic minority background, are being sought by the University of Leicester to help shape research.

A vascular research team at the University set up a registry of patients, their carers, and members of the public who have an interest in vascular research, in 2023. The registry means members can be contacted when new vascular study ideas are being discussed to gain the lay person’s perspective on study designs.

However, the team is keen to recruit more women and people from different ethnic backgrounds, so the registry can be more representative of the UK’s population. Patients with a greater disease burden of peripheral arterial disease (PAD) such as vascular amputees, and those with early stages of PAD, like a diagnosis of claudication, are also being sought.

“Having patient and public involvement (PPI) in our research means our study designs are more patient-centred, and prevents jargon from health professionals when explaining the research to potential participants,” said Vascular Research PPI Coordinator, Imelda Black. 

“It is also empowering for the patients who choose to get involved as they meet the researchers on an even playing field and get to put their views across in a welcoming space.  

“Participants in research also feel more comfortable knowing that patients like them have helped to design the studies and are overseeing the roll-out.” 

Imelda added: “Many PPI participants tell me that they feel they are giving back to the health service and helping patients like them when they become involved. It is also a form of inclusion socially for individuals with vascular conditions, who very often become isolated due to pain and difficulties getting about.”

The basic criteria for being on the registry includes having a vascular condition, usually PAD or abdominal aortic aneurysm (AAA) as these are the two current main focus areas for vascular research. Also, people who care for them or are involved in their care, such as family members or friends are really important to hear from as they have insight into the wider implications of their loved ones’ condition.  

To find out more about the register, contact Imelda Black by emailing ib139@leicester.ac.uk.