Best practices for engaging with affected communities: chronic hepatitis B as a case study
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.
Authors
- Yasmin Ibrahim (ORCID: https://orcid.org/0000-0003-4451-8488)
- Lien Tran (ORCID: https://orcid.org/0000-0002-5147-4228)
- Chris Munoz
- Thomas Tu (ORCID: https://orcid.org/0000-0002-0482-4387)
- Kenneth Kabagambe (ORCID: https://orcid.org/0009-0008-4340-1206)
- Khiet Ngo (ORCID: https://orcid.org/0009-0005-2099-3753)
- Nafisa Yussf (ORCID: https://orcid.org/0000-0003-3124-0982)
- I. Dragojević (ORCID: https://orcid.org/0000-0003-0748-4776)
- Jacki Chen
- Soumen Basu (ORCID: https://orcid.org/0000-0001-6419-1326)
- Dee Lee
- Chari Cohen (ORCID: https://orcid.org/0000-0003-1968-2104)
- Wang Su
- Marko Korenjak (ORCID: https://orcid.org/0000-0003-4024-677X)
- Isabelle Purcell
- Beatrice Zovich (ORCID: https://orcid.org/0009-0000-2607-7506)
- Bright Owusu Ansah
- Fiona Borondy-Jenkins
- Wendy Lo
- Supa Chantschool
- Adi Mondel
Institutions
- Saint Barnabas Medical Center (US)
- The University of Sydney (AU)
- The University of Melbourne (AU)
- Johnson University (US)
- Children's Hospital at Westmead (AU)
- Philippine Medical Association (PH)
- Westmead Hospital (AU)
- Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (AU)
- Environmental and Occupational Health Sciences Institute (US)
- SNV Netherlands Development Organisation (NL)
- Australian Centre for HIV and Hepatitis Virology Research (AU)
- European Federation of Allergy and Airways Diseases Patients Associations (BE)
- Liver Foundation West Bengal (IN)
- Westmead Institute (AU)
- Westmead Institute for Medical Research (AU)
- Hepatitis B Foundation (US)
Publication Details
- Journal
- Infectious Diseases of Poverty
- Published
- 2025-03-04
- DOI
- https://doi.org/10.1186/s40249-025-01288-7
- Citations
- 2
- Primary Topic
- Hepatitis B Virus Studies
- Type
- article
- Field-Weighted Citation Impact
- 2.71