A call for advocacy and patient voice to eliminate hepatitis B virus infection

The forgotten people: Hepatitis B virus (HBV) infection as a priority for the inclusion health agenda

“…An advocate with lived experience of HBV infection described the HBV community as ‘the forgotten people’, a description that is also pertinent to inclusion health populations ( Matthews et al, 2022a , Aldridge et al, 2018 ). These exclusions may lead to an increased risk of HBV infection, are amplified by HBV infection, and lead to greater morbidity and mortality as a result of inadequate access to care.…”

“…HBV infection can result in stigma and discrimination, which is magnified when combined with the experiences of socially excluded groups ( Matthews et al, 2022a ). Sharing lived experiences builds rapport, trust and equality, helping promote advocacy, build peer support networks, navigate healthcare systems and promote diagnosis and treatment of blood borne infections ( Paisi et al, 2022 ; Crone et al, 2022 ).…”

Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa

“…14 Clinical research teams should work with research participants, people with lived experience of HBV, and with ethics committees, to codesign studies, 15 with structured mechanisms to engage the HBV community and promote patient voice. 16 Management of expectations for study participants is important, so that they receive timely and relevant feedback, and can access updates and outputs from the study.…”

“…The studies that formed the backdrop for this perspective are approved by Oxford Tropical Research Ethics Committee (ref. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18], Stellenbosch University (ref. N17/01/013) and The University of the Free State (UFS-HSD2018/0193-0001).…”

Hepatitis B virus (HBV) and hepatocellular carcinoma (HCC) in sub-Saharan Africa: no room for complacency

“…In sSA, stigma and discrimination are substantial challenges for HBV, compounded by poor education and awareness, and lack of role models [16,17] ; there is an urgent need to enhance knowledge and to promote the patient voice [18] . Mobilising civil society is also key to increasing awareness and advocacy, and improving participation in research with a patient-centric focus.…”