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Decompensated Liver Cirrhosis Research Network (UK-CLIF): Building consensus for hepatology trials in the UK
Helen Crisp1, Oliver Tavabie2, Yvanne Enever3
1UCL Institute for Liver and Digestive Health, London, UK.
Insights
The UK Chronic Liver Failure network (UK-CLIF) was established to improve cirrhosis research. Key barriers identified include patient-centric materials and clinician resources, guiding future research priorities.
Area of Science:
- Hepatology and Gastroenterology
- Clinical Trial Management
- Health Services Research
Background:
- Liver disease, particularly cirrhosis, is a growing cause of mortality in the UK.
- The UK Chronic Liver Failure network (UK-CLIF) was initiated to address research gaps in high-prevalence or under-researched areas.
- A multi-stakeholder approach was adopted to foster collaboration in advancing cirrhosis research.
Purpose of the Study:
- To establish a network for advancing cirrhosis research in the UK.
- To identify key barriers and priorities for cirrhosis clinical trials through multi-stakeholder engagement.
- To develop consensus on critical areas for improving cirrhosis research infrastructure and delivery.
Main Methods:
- Network development via dissemination and snowball sampling, with online monitoring.
- Facilitated in-person workshops utilizing World Café methodology and dot voting.
- Thematic analysis of participant input to identify barriers and research priorities.
Main Results:
- Significant barriers to cirrhosis clinical trials include the need for patient-centric materials and insufficient clinician resources.
- Variability in the standard of inpatient care for cirrhosis was identified as a challenge.
- Consensus was reached on priority areas for research infrastructure, clinical factors, and future trial priorities.
Conclusions:
- The UK-CLIF network successfully engaged diverse stakeholders to identify critical issues in cirrhosis research.
- Addressing patient needs, enhancing clinician support, and standardizing inpatient care are crucial for improving clinical trial delivery.
- Future UK-CLIF activities will focus on quality improvement and coordinating a priority setting partnership for liver cirrhosis research.
Abstract:
Liver disease is a major, and increasing, cause of death in the UK. The UK Chronic Liver Failure network (UK-CLIF) was developed as a multi-stakeholder network with the aim to advance cirrhosis research, with emphasis on geographical areas of high disease prevalence or limited research activity. The process involved network development through dissemination and snowball sampling techniques, with monitoring of network development and connections between participants, developed over two online meetings. Network membership included representatives from patients, carers, clinicians, researchers, R&D professionals, industry representatives, and the third sector. Subsequently, two facilitated in-person workshops were conducted with network participants. World Café methodology and participant dot voting was used to develop areas of priority and consensus in: (i) research infrastructure for cirrhosis clinical trials, (ii) clinical factors affecting research delivery, and (iii) research priorities for future trials. Thematic analysis demonstrated that the need for patient-centric trial materials, a lack of resource for clinicians to participate in research, and variability in the standard of inpatient care for cirrhosis, were barriers for cirrhosis clinical trials. Future activities for UK-CLIF include participation in a process of quality standard setting for inpatient care for cirrhosis, and coordination of a James Lind Alliance Priority Setting Partnership to develop research questions for liver cirrhosis.
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