Background and aims: Scotland has the highest rate of deaths from chronic liver disease (CLD) in the UK. Socioeconomic and geographic isolation represent significant challenges to delivery of care. The multidisciplinary Scottish Hepatology Access Research Partnership (SHARP) aimed to identify and break down barriers to diagnosing and treating liver disease in Scotland.
Methods: SHARP comprised a core Partnership Management Group that developed projects and a Partnership Advisory Group which provided oversight.
Results: SHARP established workstreams to achieve its aims: Understanding current access to liver services To identify barriers to liver patient care in Scotland we audited liver services and surveyed the experience of patients (n=276); primary care physicians (n=199) and Gastroenterologists/Hepatologists (n=99). Technologies to monitor and diagnose CLD Liver disease is diagnosed and monitored using routine blood testing which disadvantages isolated patients. We plan to develop a point of use test to analyse ALT and AST to enable community-based identification and monitoring of liver disease. Identification of patients at risk of liver disease CLD is often diagnosed late. We propose developing an artificial intelligence tool to predict an individual's risk of an emergent admission to hospital due to CLD. This tool will be validated in a Welsh cohort. Barriers to engagement with care for liver disease Hepatology did-not-attend rates are the highest of any specialty. We propose research to co-design a suite of recommendations to improve engagement with care for CLD patients. We aim to achieve this by interviewing practitioners alongside patients who do and don't engage with services.
Conclusions: Through a national survey SHARP has developed an understanding of the issues affecting access to hepatology services in Scotland. SHARP has developed projects that will help address the issues that socioeconomically and geographically isolated patients face when it comes to identifying and treating liver disease.
Keywords: Hepatology; access; chronic liver disease; partnership; socioeconomic deprivation.
People may only realise they have liver disease when they get severe illness as a result of liver failure which may lead to death. The liver can be damaged over a long time before the person with liver disease is aware of anything being wrong. Many people with liver disease have difficulty getting to see doctors and specialist medical services. This may be due to a bad personal or social situation such as living in poorer deprived areas, or perhaps because they live in places where there are fewer medical services. The Scottish Hepatology Access Research Partnership (SHARP) project wanted to understand and improve access to liver services in Scotland. SHARP included people from all over Scotland. We included specialists in liver disease and public health, general practitioners, social care services, charities and patient representatives through the British Liver Trust. At the start of SHARP, we did a survey of patients and doctors to find what issues affect the care provided to patients with liver disease. With this information we have designed projects to help address the issues found. We know that patients can find it hard to access doctors and one project is trying to develop blood tests that can be done in people’s homes. This test will use a fingerprick of blood to identify liver damage. Another project aims to find patients before they get severe illness by using artificial intelligence. This project will use health records to find patients that are at risk of having liver disease. The final project we have developed will look at what stops patients attending clinic appointments. This project will develop tools to help improve the patient experience.
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