How to work with under-served coastal populations to inform the design of a trial to test a community support intervention to engage patients with liver cancer surveillance - interim results of an nihr research partnership

Background

Surveillance for Hepatocellular Carcinoma (HCC) improves outcomes for patients but those from deprived and underserved communities are less likely to attend surveillance scanning. This contributes to inequalities in liver health. We aim to test whether community champions could increase engagement with HCC surveillance and improve outcomes for under-served patients in deprived coastal areas. Phase 1 was to develop a PPI network that represents the communities where the champions intervention will be assessed.

Method

Our PPI Network development is at three levels (figure 1). For strategic PPI input we have engaged with pre-formed patient and public groups from 3rd sector organisations. For general PPI input we have organised liver health road shows in Newcastle, Hull and the Isle of Wight and engaged with members of the public attending cancer awareness events. Through these events we have identified representatives from specific groups at high risk of not attending surveillance. They will form a third, specific level of PPI involvement to support the study.

Results

The project started in February 2023. At the roadshows we had informal side-by-side conversation with 47 members of the public. We engaged with 12 organisations working with underserved communities. These included veterans support groups, housing support charities, a walk-in talking centre for lonely men and drug and alcohol services. From these groups we plan to recruit a PPI co-app and PPI reference group (figure 1).

Initial conversations have explored

Existing barriers to engagement with HCC surveillance:“majority of ppts did not know anything about liver cancer” Field notes from cancer awareness roadshow June 2023 The potential value of a community liver health champion:“The majority said that the volunteers encouraged them” Fieldnotes from cancer awareness roadshow June 2023 What might make an effective community liver health champion:“Training is key – accredited standards – boundaries” Field notes from liver health roadshow April 2023 The feasibility of engaging people from underserved populations within the PPI steering group for the main trial:“…hard to follow up with people that move on as they may not have an address or contact details”

Conclusion

People from under-served coastal communities can be reached by liver researchers and their input provides valuable insights when designing clinical studies in liver disease. We need to determine the best way to sustain their engagement, so they can steer the conduct and reporting of research as well as the study design.