Alcohol-related liver disease accounts for the majority of UK liver disease, which is the third most common cause of premature death in the UK. It has had disproportionately little research attention or spending in the past, despite its impact on patients and their families, and there are still many questions about the diagnosis, treatment and care of the disease that remain unanswered.
Traditionally, the focus of medical research is decided by funders and researchers. There is often a mismatch between what gets researched and what would actually make a real difference to the lives of patients. The James Lind Alliance (JLA) offers a process to ask patients, carers and health professionals to identify and then prioritise the unanswered questions that concern them most. In 2014, the National Institute for Health Research (NIHR) asked the JLA to run a Priority Setting Partnership (PSP) to find unanswered questions about the prevention, diagnosis, treatment and care of alcohol-related liver disease that are important to the people it affects. This is the first known PSP involving an alcohol-related condition.
This report explains the process that was followed to reach the agreed list of research priorities, what the priorities were and who was involved to make sure that it was independent and fair.