The Scottish Hepatology Access Research Partnership (SHARP) improving access to liver services throughout Scotland

Patient and Public Involvement (PPI)

The British Liver Trust were a co-applicant on the SHARP grant and have been key members of the development of projects. In addition, a patient partner and representation from the Simon Community and Waverley Care were involved in an advisory role in the development of projects. Patient and carer feedback was sought on the proposed projects being developed by SHARP, the results of which are included in the results section. Patient and carer opinions were also sought as part of the survey of access to liver services.

Structure

SHARP was led by Dr Ruairi Lynch from NHS Tayside and Prof. Ewan Forrest from NHS Greater Glasgow and Clyde (GG&C). To ensure effective representation and oversight, SHARP comprised a core Partnership Management Group (PMG) and an overseeing Partnership Advisory Group (PAG). The time for members of the PMG was funded by the NIHR Grant (award ID: NIHR155593) and included Hepatologists, representatives from Primary Care (including the Deep End practices that represent those from the most deprived areas in Scotland), Liver Nurse Specialists, Public Health, and Social Work (Alcohol and Drug Partnerships [ADP]). In addition, patient representation was included in the PMG, with representation from the British Liver Trust (BLT). The PMG met monthly, working groups were formed within the PMG, and these groups met more frequently to develop specific workstreams. The outputs from these working groups are outlined below in the results section. All members of the PMG were co-applicants on the grant and there was representation from throughout Scotland: NHS Tayside, NHS GG&C, NHS Lothian, NHS Lanarkshire, NHS Dumfries and Galloway, NHS Highland, NHS Western Isles and NHS Grampian.

The variety of specialists involved in the PMG was mirrored in the PAG with an equally broad geographical representation. The inclusion of public health practitioners and ADPs ensured that we were able to address the significant drivers of liver disease in Scotland. A list of members of each group is provided in the Appendix. Additionally, patient involvement in the PMG was bolstered by a co-opted patient partner and representation from the Simon Community and Waverley Care. The PAG was involved in meetings every three months and provided feedback on the evolving projects.

Administration and management

The project was administered by the NHS GG&C Clinical Trials Unit (CTU). Trial design and statistical support were provided by the Robertson Centre for Biostatistics, with Professor John Petrie serving as a co-applicant.

Meeting logistics

To ensure the involvement of representatives from Scotland, meetings were held virtually using Microsoft Teams. Hosting meetings virtually also ensured that the carbon footprint of SHARP was minimised.

Surveys

Several surveys were conducted throughout the partnership period. All surveys were promoted through the SHARP social media channels and with press releases from NHS Research Scotland. Additionally, surveys were promoted to patients by the BLT using social media platforms and established patient networks. Finally, surveys targeting physicians were promoted using clinical networks such as the Scottish Society of Gastroenterology and the Deep End network of general practices. Surveys were administered via two separate platforms.

Patient and Public Involvement (PPI) and patient representation

SHARP has made strides to develop projects to improve the care of patients with liver disease. The integral involvement of patients and their representatives is a strong element that has driven this. Specifically, Amy Cordwell from the British Liver Trust was a member of the PMG as a co-applicant, and Kirsty Mills was co-opted into the PAG as a patient member having seen press releases about SHARP. Their input to the project has been invaluable, and their positive impact is best summarised by the quotes they have provided:

“Being able to participate in the SHARP project has been rewarding for me as a patient. Firstly, I've enjoyed being able to contribute (somewhat!) usefully to discussions, providing my 'lived experience' perspective to flag issues which [healthcare providers] HCPs might not otherwise have considered. It's been exciting to learn about new, exciting technologies which could potentially improve the accessibility of liver disease care for future patients in Scotland. Finally, it's been heartening to witness the positive and proactive attitude with which SHARP members approach this work; it has been clear that members are very passionate about trying to make practical and effective changes to better facilitate patient access across Scotland. This, in turn, gives me a sense of hope for the future.” Kirsty Mills

“Participating and being involved with the SHARP project has been an insightful and positive experience. It was heartwarming to see patients being involved from the beginning of this project and gave patients an insight into current research that is being carried out to better the care and treatment of all liver disease patients across Scotland. The patient voice was heard throughout this project and it was brilliant to work alongside such motivated and passionate healthcare professionals to make improvements for liver disease patients for the future”. Amy Cordwell

In addition to direct patient involvement in the development of projects, we outline below how we sought feedback on the projects that we have developed. We have also promoted the work of SHARP through regular press releases via NHS Research Scotland, which can be accessed via our website: https://www.nhsresearchscotland.org.uk/research-areas/hepatology/sharp. We also promoted our work via our X profile @sharphepatology and presented the project outline as a poster and abstract at the Scotland Health Research and Innovation Conference in October 2023.

Project development

The purpose of SHARP was to set up and develop projects that identify the barriers faced by both socially and geographically isolated patients when it comes to identifying and treating liver diseases. Early on, we decided that the best approach was to develop separate workstreams to first help identify the issues and then develop projects to tackle them. Below, we outline the four workstreams that we developed and the feedback that we received.

   1.   Understanding current access to liver services

Early discussions by the combined PMG and PAG recognised that to address access to hepatology services in Scotland, we would need to identify the barriers to accessing services. There had been a very successful survey conducted by the BLT in 2019 on patients’ attitudes toward disease management. However, there has never been a nationwide survey canvassing not only the opinions of clinicians and patients but also the provision of hepatology services throughout Scotland. Therefore, we devised four separate surveys and audits.

The data from these surveys are currently being analysed and will provide a map of patient and clinician experiences throughout Scotland, and how these experiences correspond to the provision of services nationwide. This will inform the research questions to be addressed, but it will also provide a unique snapshot of the service gaps in Scotland. We plan to publish and present these results as they will be informative for the wider UK hepatology community.

   2.   Technologies to monitor and diagnose CLD

Liver disease is often diagnosed through routine blood testing, and many liver diseases require regular monitoring of liver function. Due to its asymptomatic nature, the diagnosis of CLD often relies on opportunistic screening of patients who interact with healthcare through routine blood testing or alternatively portable Fibroscan machines are used in the community outreach setting. Notably in some countries there are routine annual health check-ups for all citizens which provide the opportunity to identify liver disease, but these are costly and would not be feasible in the NHS due to already stretched capacity (Tajirika et al., 2023). CLD is also often diagnosed late because of its relatively asymptomatic disease course. Indeed, up to 61% of patients with steatotic liver disease are diagnosed at the time of decompensation of established cirrhosis (Hussain et al., 2020). There is no currently available point-of-use (POU) test for liver disease that is simple, rapid, and can be performed in non-clinical settings. Such a test would revolutionise the identification of those at risk of advanced liver disease, as it would enable widespread screening of at-risk populations. Furthermore, many patients live in geographically isolated areas with little access to healthcare services. Feedback from BLT patient groups suggested that the diagnosis or monitoring of liver disease with near-patient testing would dramatically improve patient experience.

To address this unmet need, we have collaborated with Prof. Karen Faulds (University of Strathclyde) and Prof. James Dear (University of Edinburgh), who have already developed a point-of-care assay to detect liver injury in patients who have taken a paracetamol overdose. We propose developing a POU test that quantifies ALT and AST levels using patient finger-prick blood. This assay will enable the immediate identification of liver inflammation as well as the AST:ALT ratio in a non-clinical setting. The Gwent AST project has accurately identified patients at risk of advanced liver disease using an AST:ALT ratio performed by GPs (Yeoman et al., 2020) and our POU test would take the AST:ALT ratio out of primary care, bringing it into the community, thus enabling cost-effective screening and identification of at-risk populations. This will enable application of the POU in non-clinical settings in at risk populations who are engaging with third sector services therefore catering to patients with alcohol related liver disease, metabolic dysfunction-associated steatotic liver disease (MASLD) and viral hepatitis.

The above is being worked into a grant proposal and if successful, the assay will be developed by Prof. Karen Faulds’ research group and trialled clinically in the hepatology clinics in NHS Tayside.

   3.   Identification of patients at risk of liver disease

The median survival of patients with compensated (stable) cirrhosis is ~12 years compared to ~2 years for patients with decompensated cirrhosis (D’Amico et al., 2006) and only ~21% of patients are diagnosed with advanced liver disease in primary care (Blais et al., 2015). Therefore, there is a clear benefit of early identification and intervention in patients at the greatest risk of disease progression. The Kerr Report (NHS Scotland, 2005) stated that the NHS in Scotland should aim to provide continuous, anticipatory care to ensure that, as far as possible health care crises are prevented from happening”. There is already an awareness of not only the importance of the early detection of asymptomatic advanced liver disease but also the challenges associated with this. However, there is also a need to address the detection of early liver disease. This essentially moves the focus of detection ‘upstream’ when interventions may have the greatest impact on subsequent disease incidence. The difficulty, as we have already outlined, is that current community diagnostic strategies rely on patients engaging in healthcare services and undergoing clinical assessments (e.g., blood tests and anthropometric investigations). Therefore, innovative strategies for early recognition and intervention are needed to improve CLD outcomes.

We propose the development of an artificial intelligence tool to predict an individual's risk of being admitted to hospital as an emergency inpatient for chronic liver disease within five years. We aim to develop this tool by using routine electronic healthcare data to predict future liver health. Cognisant that hard-to-reach groups have a paucity of primary care data but do have data capture equity when it comes to secondary care data, we will use data from patients in an unscheduled hospital admission cohort to train and benchmark a collection of classical and state-of-the-art machine learning models on data spanning 10 years to predict the 1-, 3-, and 5-year risks of emergency hospitalisation for liver disease (of any aetiology). We will then aim to validate this tool by working within the Digital & Health Care Wales secure data environment with collaborators from the NIHR-funded Liver Disease Cymru Partnership. One important consideration of such a project is patient and public acceptability, and it will therefore require stakeholder mapping, which will form an integral part of this project, along with the development of an intervention for patients identified as being at high risk. Once validated, this detection methodology will be piloted in different clinical areas to reflect both socially and geographically isolated populations. This pilot will involve implementation of aetiology specific interventions. Once validated this tool will enable identification of patients at risk of liver disease in hard-to-reach groups including those that don’t routinely attend their primary care physician as they will be identified from secondary care data. The subsequent challenge will be engaging with these population groups but work from workstream 4 outlined below will identify the barriers and the solutions to poor engagement with liver services.

We have submitted this work to the Health and Social Care Delivery Research Call from the NIHR.

   4.   Barriers to engagement with care for liver disease

A scoping review conducted by our team in August 2023 identified that did-not-attend (DNA) rates were higher for hepatology than any other specialty and that non-attendance and non-engagement were associated with poorer outcomes, including premature death. The review highlighted a variety of reasons for non-attendance, including the importance of stigma and discrimination as barriers to care, and concluded that there was a paucity of qualitative research specifically exploring barriers to care for people with CLD in the UK. Therefore, we developed a project to explore barriers to care for adults with CLD, and potential ways to overcome these barriers. We achieved this through the following three research objectives:

People with lived experiences of CLD will be involved in this research, including a PPI co-applicant and peer researchers. Our focus is on the three leading causes of CLD in Scotland: ARLD, MASLD, and viral hepatitis. We hope that by better understanding the barriers to care, we can improve engagement and outcomes for these patient groups.

We have submitted a funding application to the Chief Scientist Office (CSO) for Scotland, specifically for the Health Improvement, Protection, and Services Research Committee.

Workstreams survey

To gauge the relevance of these workstreams, we conducted a survey of patients, caregivers, and allied health professionals. This survey was promoted via social media and administered using Microsoft Forms. 53 people responded to the survey; their backgrounds are outlined in Table 1.

Respondents were asked the same set of questions for each workstream and were asked to rate their responses using a Likert scale. The results outlined in Figure 1 demonstrate that the respondents were generally positive about all workstreams. Furthermore, specific comments from respondents helped us refine the project proposals to ensure that all opinions were considered.

Figure 1. Likert scales of responses to questions relating to the four workstreams developed by SHARP.