Patient engagement work central to award win for Royal Free London doctor

Liver specialist Dr Louise China is passionate about engaging patients in research, but the extremely poor health of some of those she cares for can make getting them involved in it a difficult proposition.

Many advanced cirrhosis patients suffer from low-grade hepatic encephalopathy, a brain condition which makes reading difficult due to impaired concentration. This means that some of the patient information offered can be a real challenge for this group of patients and may put them off taking part in research.

Louise, who is based at the Royal Free London NHS Foundation Trust, wanted to increase access to clinical studies for patients with advanced liver disease. So, working with cirrhosis patients and their families in tandem with a student, she created and supervised a qualitative study aiming to improve patient participation in liver clinical trials by producing innovative educational materials in different formats.

Patient information videos, to complement traditional patient information sheets, were subsequently created for two CRN portfolio studies (ASEPTIC and EPIC – Exploring Peritonitis in Cirrhosis trial). These videos improved information retention compared to written information alone and patients particularly found them useful when discussing study involvement with family members.

“Patients were recurrently telling me that the huge amount of written information they were given for studies was off putting and sometimes difficult to understand” explained Louise. “I was pretty sure we could do something better and that was the start of that project.”

Now, this work is part of the reason that Louise has won a national award from the NIHR and British Society of Gastroenterology (BSG).

These BSG/NIHR CRN awards provide an important opportunity to further a joint commitment to encouraging research and showcase examples of excellence in the conduct of both gastroenterology and hepatology clinical research.

Louise won in the 'Early Career Researcher and those new to research showing a significant contribution to recruitment into NIHR portfolio studies' category, one of three categories.

She was also a key part of the key part of the ATTIRE study into the effectiveness of albumin as a treatment for end-stage liver disease patients. This 35 centre UK RCT recruited 777 unwell hospitalised cirrhosis patients and was recently published in The New England Journal of Medicine.

She explained: “As clinical research fellow I was integral to establishing the ATTIRE network by working with the CRN and UCL Comprehensive Clinical Trials Unit to identify NHS hospital sites and provide subsequent training and research nurse support throughout the study.

“Working with research nurses, I developed online catch-up training, a research team website with accessible documents, guidance for recruitment of patients who lacked capacity and held frequent Q&A sessions.”

Patient engagement is a theme which runs through Louise's work, and her passion for it is very evident. “I think it is vital to keep integrating research in clinical practice. I want to be a good clinician who is very research-active. Hepatology is a very varied specialty so there is much to look at.”

As NIHR CRN Hepatology trainee representative, Louise helped developed and run the inaugural NIHR research skills training programme for gastroenterology trainees. This year long programme formally provides the education to equip trainees with the skills they require to be site principal investigators (PIs) and recruit to CRN studies on day 1 as a Consultant.

“The CRN has been a great resource throughout my work, particularly during ATTIRE, and I want to continue working with them as I go on through my research career,” emphasised Louise.

“I would also like to thank my mentor, Professor Alastair O'Brien, who has been an inspiration in helping to get me to this point.”

Louise will be presented with her award at the next BSG Annual conference later in 2021.

Professor William Rosenberg is the National Specialty Lead for NIHR CRN Hepatology Specialty said: “All three winners in have made outstanding contributions to clinical research and are role models for their peers. The applications in all categories were extremely strong and reflect the excellence of gastroenterology and hepatology research.”