Trial recruitment research led by our patients

Alan Hyde, Carol Rawlings, Kevin McCabe and Ian Soady

Patient  paper recently published in the journal ‘Gastrointestinal Nursing’ has proved that patient involvement can really enhance research at University Hospitals Birmingham NHS Foundation Trust (UHB).

Patient and Public Involvement (PPI) panel members worked alongside clinicians and researchers at UHB recently, in collaboration with the Birmingham Biomedical Research Centre (BRC), part of the National Institute for Health Research (NIHR).

The paper considered how liver patients and invited to take part in clinical trials, as well as barriers to them either knowing about the trials or taking part in them when informed.

Carol Rawlings, PPI Liver Review Volunteer, was one of five panel members who helped write the paper.

“As liver disease is England’s fifth largest cause of death and this rate is increasing year-on-year, we thought that clinical trials are a crucial way to develop new treatment approaches.

“We wondered if recruitment to research trials was limited by patients’ willingness to participate, and how aware patients were of their eligibility to participate.

“We decided to conduct a survey, with support from the liver outpatient nursing and administrative team, to see whether this was the case.”

 The survey was distributed to those attending the UHB liver outpatient department and to patients with viral hepatitis over a two-week period, and measured how aware patients with liver disease were of opportunities to take part in trials.

Findings from the survey were very encouraging, including the fact that three quarters of respondents were aware of clinical trials taking place at UHB.

However, the research also highlighted that a significant number of patients who express an interest in clinical trials are not asked to take part, and a more detailed project will be needed to assess why this may be the case.

The results also outlined the fact that while many patients were being approached by health professionals, there was room to expand other recruitment strategies, such as invitation letters, to reach potential participants.

UHB is committed to patient and public involvement, and papers like these are proof of the importance of collaborations between PPI members and UHB staff.

The idea for the survey came directly from the PPI team, and the results will directly shape the future of liver research recruitment at UHB.

The paper will also be displayed as a poster at the forthcoming ‘Celebrating Multidisciplinary Research in the NHS’ event, which will be held at the Queen Elizabeth Hospital Birmingham (QEHB) in May.

If you are interested in getting involved with the PPI panel, and helping to develop research, please contact the NIHR BRC Patient and Public Involvement/Engagement Manager at or call 0121 371 8486.