The Scottish Hepatology Access Research Partnership (SHARP)
19th September 2023
The Scottish Hepatology Access Research Partnership (SHARP) has been formed to address issues relating to the accessibility of liver services to those at risk of developing liver disease as well as those who already have liver disease.
Death rates from liver disease in Scotland are among the highest in the world. Liver disease usually develops silently with no signs or symptoms, and the routine tests currently done in general practice do not detect unsuspected liver scarring or cirrhosis.
A further challenge in remote and rural populations, and in areas with higher levels of social deprivation, is poor access to healthcare services. To address these issues, the following areas of work are proposed:
- Understanding current access to liver services across Scotland
- New technologies to monitor liver disease
- Identifying people at risk of liver-related events
- Recognition of factors affecting engagement with liver services
SHARP are asking you for your views on these research proposals.
Read the outlines below and complete the questionnaire to ensure SHARP is addressing the issues that matter most to you.
- Read more about SHARP
1. Understanding current access to liver services across Scotland
Background Issue: Availability and access to liver services vary throughout Scotland. We want to learn about the experiences of people living with liver disease, particularly about their interactions with GP and hospital services. We also want to look at what GPs and gastroenterology/liver doctors think about access to liver services in their health board. Finally, we want to assess what services are available in each health board.
Proposed Research: With the help of our partners the British Liver Trust we are going to survey people with liver disease using an electronic survey and paper surveys in hospitals. For GPs and hospital gastroenterology/liver doctors we are going to circulate electronic surveys using networks of Scottish doctors. We will also assess the liver services available in each health board in Scotland by approaching managers in each health board to complete an assessment of the services available.
Intended Outcome: Establish what gaps exist with regards to the supply of liver services but also what barriers exist for both people with liver disease and doctors in accessing these services. Knowing this will inform the development of projects to improve access to liver services throughout Scotland. This will ultimately improve care for people living with liver disease.
2. New technologies to monitor liver disease
Background Issue: Liver disease often requires frequent blood tests to monitor response to treatments. People living with liver disease can often find it difficult to attend to have these blood tests checked as they may live a long distance from either their GP or the hospital. Feedback has suggested that if there were ways of monitoring blood tests at home this would improve the experience of people living with liver disease.
Proposed Research: We propose developing technologies to check blood samples at home and for the results to be available to both the hospital and the person with liver disease.
Intended Outcome: reduce the requirement for people with liver disease to attend their GP/local hospital for blood tests. This will improve the monitoring and management of liver disease.
3. Identifying people at risk of liver-related events
Background Issue: There are many people at risk of future liver problems that we simply cannot identify. Unfortunately, about three-quarters of people with cirrhosis are not diagnosed until they present to hospital with complications of end-stage liver disease, by which time life expectancy is significantly reduced and treatment options are limited. Early identification of people in the community who are at high risk of liver disease, some of whom may not be well known to their GP, would enable proactive and targeted strategies for prevention and monitoring and ultimately better population health outcomes.
Proposed Research: There is a wealth of accessible data available through electronic health records and other administrative sources (e.g., previous A&E attendances, inpatient and outpatient activity, medical prescriptions, and demographic data) that can be collected and analysed safely and securely. We plan to develop an artificial intelligence (AI)-based model using historical healthcare data that can predict the 5-year risk of first hospitalisation for liver disease (of any cause). We will then test this risk prediction model in a large primary care population in Scotland.
Intended Outcome: An AI-based risk prediction approach has already proven successful in other settings (e.g., reducing the number of emergency admissions in primary care) and this study will help us to develop new pathways for liver disease prevention and focus on geographical areas with inadequate service provision.
4. Recognition of factors affecting engagement with liver services
Background Issue: Many people with liver disease are unaware of the condition and may not engage with liver services until or unless they develop symptoms. An understanding of the condition and a monitoring programme can reduce preventable complications of liver disease.
Proposed Research: The aim of this project is to understand the reasons why some patients are not able to access, or do not engage with, liver services. The reasons may be multiple and varied, from lack of awareness to transport issues to stigma. Referral and engagement with attendance at healthcare appointments, as well as adherence to lifestyle advice, will be assessed through structured interviews with those who have, or who are at risk of, liver disease.
Intended Outcome: By understanding the reasons why some people with liver disease are not able to access, or don’t engage with, liver services, it is hoped that these barriers can be addressed and overcome. More effective engagement with liver assessment and lifestyle advice could significantly reduce liver complications.