Patient collaboration to improve care options for liver and gallbladder disorders
Dr Kurinchi Gurusamy (Royal Free Hospital) is leading a James-Lind Alliance – Priority Setting Partnership to develop an effective treatment questionnaire for patients with non-alcohol related liver and gallbladder disorders.
The purpose of this research
There are a number of different prevention, treatment, diagnosis, support, and care options for liver and gallbladder disorders. It is important that clinicians undertake research to try to understand which of these are effective and make a difference to those affected. Research should focus on questions that are important to people with, or at high risk of liver and gallbladder disorders, those who care for them and healthcare professionals who treat, identify and try to prevent liver and gallbladder disorders.
Collaborative Patient Engagement
Dr Kurinchi Gurusamy is leading a James-Lind Alliance – Priority Setting Partnership where he is collaborating with other clinicians and patient support groups such as British Liver Trust and Primary Sclerosing Cholangitis in order to identify the top 10 research priorities in the field of non-alcohol related liver and gallbladder disorders. This process involves two surveys and a face-to-face meeting where clinical experts and patient representatives discuss and identify the top 10 priorities.
The first survey has now been completed and the group identified more than 400 questions. The team shortlisted this down to 48 questions, based which of the 400 the panel of clinical experts and patient representatives thought were most important.
However, this still has to be further reduced to 10 questions. To aid this process a second survey is being conducted to find out the importance of the question to patients, carers, and health professionals who provide treatment for patients. Following the closure of this survey in August 2016, we plan to conduct a face-to-face meeting in September to identify the top 10 priorities.