A major new study published today in Gut has given patients unprecedented influence over the future of liver cirrhosis research, setting out a new agenda that experts say could transform care by shifting the focus of research towards prevention, earlier diagnosis and living well with the disease.
The study, conducted through the James Lind Alliance with funding from the National Institute for Health and Care Research (NIHR) and the Royal Free Charity, represents the largest patient-driven research prioritisation exercise ever undertaken in liver cirrhosis. It involved more than 400 people with lived experience and 200 healthcare professionals.
Liver disease remains a growing public health challenge, accounting for around 4% of deaths globally and ranking as the second leading cause of death in people of working age in the UK, with outcomes significantly worse in more deprived communities.
The research identified the top priorities for future studies, including preventing progression to advanced liver disease, improving care pathways, supporting mental health and wellbeing, helping people stop drinking alcohol where needed, understanding whether cirrhosis can be reversed, and developing effective diet, exercise and lifestyle programmes.
The findings highlight a clear shift away from focusing solely on late-stage complications towards prevention, early diagnosis and person-centred care, with patients calling for more personalised approaches to treatment, better support for self-management, and improved access to coordinated services.
Lead author, Dr Guatam Mehta a consultant Hepatologist from the Royal Free London NHS Foundation Trust in London said:
“To deliver real impact, clinical research must align with what matters most to patients and their families. This work provides a clear, patient‑driven roadmap for cirrhosis research – one that emphasises prevention, earlier intervention, and personalised approaches to care.”
Vanessa Hebditch, Director of Communications & Policy at Liver UK, the new name for the British Liver Trust and co-author of the paper, added:
“This landmark study sends a powerful message: people affected by liver cirrhosis want research that helps them live better for longer – not just care at crisis point. For too long, patients have told us they lack clear information, support and coordinated care. These priorities make it clear that prevention, mental health support, and personalised treatment must now be at the centre of research and services.”
The study captures powerful insights from people living with cirrhosis, who repeatedly asked questions such as “What can I do to help myself?”, “Is there a diet that could help?”, and “How can we safeguard mental health?”, reflecting a strong desire for practical support, clearer information and greater involvement in decision-making.
Richard Allen, a patient representative who supported the study, said:
“Living with cirrhosis is not just about managing physical symptoms it affects every part of your life and the lives of your loved ones. Patients want answers about how to stay well, how to slow the disease, and how to cope mentally. Being part of this project has shown the power of bringing patients and their families into the process. These priorities reflect real, everyday concerns – and they must now drive change.”
The research also highlights major gaps in evidence, including limited data on effective lifestyle interventions, care pathways and mental health support, as well as the need to better include underserved groups in clinical trials.
Liver UK is calling on funders, policymakers, clinicians and researchers to act on these findings and prioritise research that reflects the real needs of patients, with a stronger focus on prevention, reducing inequalities and improving quality of life for everyone affected by liver disease.
About the National Institute for Health and Care Research (NIHR)
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
- Funding high quality, timely research that benefits the NHS, public health and social care;
- Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
- Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
- Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
- Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
- Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.
NIHR is funded by the Department of Health and Social Care. Its work in low- and middle-income countries is principally funded through UK international development funding from the UK government
