Liverpool volunteer discovers hidden heart condition during routine research health check

A Liverpool woman who volunteered to take part in a medical research study discovered she had a hidden heart condition after what she describes as a “health MOT” at the Royal Liverpool University Hospital.

The unexpected diagnosis came during routine screening at the NIHR Clinical Research Facility: Liverpool (CRF), where Sylvie had signed up as a healthy volunteer to help improve how information about clinical trials is shared with future patients and participants.

Although the 26-year-old felt completely fit and well, a routine ECG, which checks the heart’s rhythm, revealed signs of Wolff-Parkinson-White syndrome, a condition that affects the heart’s electrical signals.

Sylvie was unable to take part in the study but says she is grateful the condition was spotted before it caused any problems.

She said:

“I was a bit nervous initially as all I knew was that my ECG wasn’t normal and that’s quite scary to hear.

“I was also disappointed that I wasn’t able to take part in the study but at the same time extremely grateful to the team for catching it and putting my health first.”

She was quickly referred for further hospital tests, which confirmed the diagnosis.

Sylvie added:

“The screening process is a bit like an MOT for participants and a great way to get a health check-up, even if you seem totally healthy.”

Her experience reflects findings from a review carried out by researchers at the NIHR Clinical Research Facility: Liverpool, which examined screening data from 1,158 people attending early-phase clinical trial appointments over eight years.

The review found previously undiagnosed health concerns in around one in 17 healthy volunteers and one in 25 patients. In some cases, participants were advised to seek further medical care or treatment for conditions they had no idea they had.

The work was led by Kate Dodd, Recruitment and Engagement Manager at the NIHR Liverpool CRF, alongside Professor Lauren Walker, Deputy Director of the NIHR CRF: Liverpool.

The findings inspired Kate to carry out a research project through the University of Liverpool looking at how information about clinical trials could be made easier to understand for people thinking about taking part.

Working alongside patients and members of the public, she helped rewrite Participant Information Sheets to explain more clearly that while research studies are not intended to provide medical treatment, the health screening involved can sometimes uncover previously unknown conditions.

Kate said:

“We wanted people considering taking part in research to have information that was clear, honest and easy to understand.

“This work showed that while studies are not designed to directly benefit participants medically, the screening process can sometimes identify unrelated health conditions people may not know they have.

“By working closely with patients and members of the public, we were able to develop wording that is much clearer and more reassuring for future participants.”

The updated information replaces medical jargon and complex statistics with simpler language following feedback from members of the public.

Professor Lauren Walker said:

“This work shows how important it is to involve patients and the public when developing research information. Clear communication helps people make informed decisions about taking part in research and ensures information is accessible to everyone.”

The project also highlights the important role volunteers play, not only in helping medical research progress, but also in improving the experience for future participants across the NHS.

The full research paper is now available to read here.

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