ICANEQUAL multi-stakeholder partnership: Reducing inequalities in liver cancer (HCC) diagnosis, treatment and care across the UK
Authors: Tripathee Sheela , Treweek Shaun , Van Hemelrijck Mieke , Ross Paul , Watson Verity , MacLennan Graeme , Guntupalli Aravinda Meera , Adams Julie , Majmudar Bhuvan , Murchie Peter , Bekheit Mohamed , MacLennan Sara J ,   and the ICANEQUAL Community of Expertise
Published: January 2025

Background Hepatocellular Carcinoma (HCC) is one of the most frequent cancers and a common cause of cancer-related mortality globally; its incidence is increasing. The tumor doubling time is relatively short in HCC. Early diagnosis and timely and appropriate treatment decisions are key factors that influence patient outcomes. There is a need to reduce diagnostic delays and optimize treatment allocation to patients who will benefit the most. The limited insight into differences in HCC incidence, treatment, and variations in outcomes for underserved populations and the lack of research to address inequalities for underserved populations highlights the need for the current partnership project. Aims and objective(s) The ICANEQUAL partnership project aimed to identify equitable and appropriate care for HCC across the UK and understand patient experiences of the current clinical pathway develop and evaluate an ‘optimal’ new care pathway and build a Community of Expertise in HCC. Design and methods The ICANEQUAL partnership project included the design of a community of experts and the conduct of a series of collaborative workshops. Participant recruitment, workshop format, and development of materials and discussions were informed by the INCLUDE Ethnicity Framework. The analysis of workshop conversations was guided by the Theoretical Framework of Acceptability and inductive coding. Setting and participants Key stakeholder groups and communities in cancer care or HCC from across the UK, including patients, patient champions, patient advocacy organizations, community organizations, academics, and healthcare professionals working in liver diseases or HCC, were invited. Results 38 stakeholders from urban, rural, and coastal communities across the UK participated in this study. Current models of practice for HCC treatment and care vary across the UK. The participants agreed that solutions to support timely diagnosis and referral within care systems are needed. Six themes (Workshops 1 and 2) informed the development of five priority areas and three project outlines in Workshop 3. The results of this partnership project can be summarized as the need for a robust clinical pathway and evidence-based referral and treatment guidelines, appropriate data, the amplification of patient voice within care, the role of patient and community groups in delivering support tailored to specific under-served populations (recognizing that this has to be appropriately supported by the healthcare system), and the importance of multi-sector collaboration to achieve solutions to improve HCC diagnosis and effective care. Conclusions This study provides an understanding of early diagnosis and treatment allocation for HCC and a definitive statement on the gaps for underserved populations in the UK. This project highlights the need for robust guidelines, data, amplification of patient voices, support tailored for specific under-served populations, and multi-sector collaboration to improve HCC diagnosis and effective care.