Best practices for engaging with affected communities: chronic hepatitis B as a case study

Abstract

Abstract Hepatitis B is the single most common cause of liver cancer, affecting > 250 million people worldwide (mostly in resource limited communities) and killing > 1 million people annually. The condition is marked by poor rates of diagnosis (14%) and treatment (8% of eligible individuals). As with many health conditions, engagement with the affected community is crucial for designing, promoting, and advocating for effective solutions in the health system. However, engagement with the affected community remains difficult in many instances due to variable understanding of the roles, capacities, and expertise of people with lived experience. Through community-led consensus, we provide here several practical approaches for how public health, clinical, scientific, industrial, and policy-making bodies should engage with the hepatitis B affected community. These expert consensus practices have been developed by people living with hepatitis B and/or advocating for them. We suggest that these practices should be incorporated into any engagements with communities affected by hepatitis B and can be generalisable to other health conditions. Graphical Abstract

Keywords

• Lived experience
• Consumer engagement
• Expert consensus
• Patient advocacy
• Community research
• Policy development