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An alcohol-related liver disease multi-stakeholder hub (ARMS-Hub) to enhance research activity in underserved
Ashwin Dhanda1,2, Victoria Allgar1, Neeraj Bhala3
1Faculty of Health, University of Plymouth, Plymouth, England, UK.
Insights
Stigma hinders Alcohol-related Liver Disease (ArLD) research. This project built partnerships and identified a key research priority: integrating mental health and liver services to improve patient outcomes.
Area of Science:
- Public Health
- Medical Research
- Health Services Research
Background:
- Alcohol use is a major cause of death and disability in the UK, with Alcohol-related Liver Disease (ArLD) posing a significant healthcare burden.
- Minimal research exists on ArLD prevention, morbidity, and mortality due to factors like stigma and funding challenges.
- This project aimed to foster interdisciplinary collaboration to address research gaps in ArLD.
Purpose of the Study:
- To establish interdisciplinary partnerships for ArLD research.
- To explore the impact of stigma on ArLD research and patient engagement.
- To develop a research agenda and capacity building for ArLD.
Main Methods:
- Formed the ARMS-Hub with Health Care Professionals (HCPs) and Patient and Public Involvement and Engagement (PPIE) members.
- Conducted stakeholder and PPIE meetings to identify research priorities and discuss stigma.
- Established a mentorship program to support early career researchers and knowledge exchange.
Main Results:
- The ARMS-Hub included 31 HCPs and 40 PPIE members, engaging in multiple meetings.
- Key themes identified regarding stigma included education, language, and access to care.
- A primary research priority was the disconnect between mental health and liver services.
Conclusions:
- Stigma significantly impacts professional and PPIE engagement in ArLD research.
- The disconnect between mental health and liver services is a critical area requiring research focus.
- This collaborative initiative successfully developed a research agenda to address identified ArLD priorities.
Background:
Alcohol use is the third leading risk factor of death and disability in the UK and costs the NHS £3.5 billion per year. Despite the high prevalence and healthcare burden of Alcohol-related Liver Disease (ArLD), there has been minimal research addressing prevention, morbidity and mortality. Reasons for this include stigma and lack of interest from public, charitable and commercial funding bodies. The objectives of this project were to identify and develop interdisciplinary partnerships, to explore stigma in ArLD, to develop a representative Patient and Public Involvement and Engagement (PPIE) group, to build research capacity, and to develop interdisciplinary research proposals targeting key research priorities.
Methods:
ArLD networks were identified by members of the Project Steering Group. Health Care Professionals (HCPs) from different backgrounds were invited to join the ARMS-Hub. PPIE representatives were invited through charities and support groups. Research areas were identified, discussed, prioritised and ranked. Research questions were refined during an in-person symposium. A mentorship programme was created to encourage and facilitate networking and knowledge exchange for early career researchers.
Results:
We established the ARMS-Hub with 31 HCPs and 40 PPIE members. There were five stakeholder meetings, which included PPIE representation. Three virtual and three in-person PPIE meetings took place. Topics relevant to stigma in ARLD identified during the meetings were education and awareness, language, and access. Priorities identified were the disconnect between mental health and liver services, education around the wider harms of alcohol, and education of HCPs regarding stigma. We established a mentorship network that regularly meets to support development of new research ideas.
Conclusions:
Stigma is central to lack of research engagement from professionals and PPIE. The main priority identified relates to the disconnect between mental health and liver services. This collaborative study has allowed development of a research agenda to address this priority.
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