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

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Abstract

High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent priority for clinical and academic communities. We present experiences and insights by an expert interdisciplinary group focusing on barriers that impede adults living with HBV infection from participating in clinical studies. Our viewpoint describes barriers we have identified through working in a variety of settings across South Africa, including lack of education and awareness, experiences of stigma and discrimination, challenges for governance and data management, and a burden of complex morbidity. Through identifying these challenges, we propose solutions and interventions, highlight new approaches, and provide a framework for future research.

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Research co-design in health: a rapid overview of reviews

Peter N. Slattery, Alexander K. Saeri, Peter Bragge (2020)

Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.

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Hepatitis B Virus: Advances in Prevention, Diagnosis, and Therapy

Mindie H Nguyen, Grace Wong, Edward Gane … (2020)

Currently, despite the use of a preventive vaccine for several decades as well as the use of effective and well-tolerated viral suppressive medications since 1998, approximately 250 million people remain infected with the virus that causes hepatitis B worldwide. Hepatitis C virus (HCV) and hepatitis B virus (HBV) are the leading causes of liver cancer and overall mortality globally, surpassing malaria and tuberculosis. Linkage to care is estimated to be very poor both in developing countries and in high-income countries, such as the United States, countries in Western Europe, and Japan. In the United States, by CDC estimates, only one-third of HBV-infected patients or less are aware of their infection. Some reasons for these low rates of surveillance, diagnosis, and treatment include the asymptomatic nature of chronic hepatitis B until the very late stages, a lack of curative therapy with a finite treatment duration, a complex natural history, and a lack of knowledge about the disease by both care providers and patients. In the last 5 years, more attention has been focused on the important topics of HBV screening, diagnosis of HBV infection, and appropriate linkage to care. There have also been rapid clinical developments toward a functional cure of HBV infection, with novel compounds currently being in various phases of progress. Despite this knowledge, many of the professional organizations provide guidelines focused only on specific questions related to the treatment of HBV infection. This focus leaves a gap for care providers on the other HBV-related issues, which include HBV’s epidemiological profile, its natural history, how it interacts with other viral hepatitis diseases, treatments, and the areas that still need to be addressed in order to achieve HBV elimination by 2030. Thus, to fill these gaps and provide a more comprehensive and relevant document to regions worldwide, we have taken a global approach by using the findings of global experts on HBV as well as citing major guidelines and their various approaches to addressing HBV and its disease burden.

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Progress towards elimination goals for viral hepatitis

Andrea Cox, Manal El-Sayed, Jia-Horng Kao … (2020)

The global burden of viral hepatitis is substantial; in terms of mortality, hepatitis B virus and hepatitis C virus infections are on a par with HIV, malaria and tuberculosis, among the top four global infectious diseases. In 2016, the 194 Member States of the World Health Organization committed to eliminating viral hepatitis as a public health threat by 2030, with a particular focus on hepatitis B virus and hepatitis C virus infection. With only 10 years to go until the 2030 deadline is reached, and although much progress has been made towards elimination, there are still some important gaps in terms of policy and progress. In this Viewpoint, we asked a selection of scientists and clinicians working in the viral hepatitis field for their opinions on whether elimination of viral hepatitis by 2030 is feasible, what the key areas of progress are and what the focus for the next 10 years and beyond should be for viral hepatitis elimination.

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Author and article information

Contributors

Philippa C. Matthews

Journal

Journal ID (nlm-ta): J Virus Erad

Journal ID (iso-abbrev): J Virus Erad

Title: Journal of Virus Eradication

Publisher: Elsevier

ISSN (Print): 2055-6640

ISSN (Electronic): 2055-6659

Publication date PMC-release: 23 February 2023

Publication date Collection: March 2023

Publication date (Electronic): 23 February 2023

Volume: 9

Issue: 1

Electronic Location Identifier: 100317

Affiliations

[a ]University of the Free State, Nelson Mandela Drive, Bloemfontein, 9300, South Africa

[b ]Division of Medical Virology, University of Stellenbosch, Tygerberg Hospital, Francie Van Zijl Drive, Cape Town, 7505, South Africa

[c ]Division of Infectious Diseases, Department of Medicine, Stellenbosch University / Tygerberg Academic Hospital, Cape Town, South Africa

[d ]Ampath Laboratories, Pretoria, South Africa

[e ]Division of Gastroenterology, Department of Medicine, Stellenbosch University / Tygerberg Academic Hospital, Cape Town, South Africa

[f ]Cooperman Barnabas Medical Center, Florham Park, NJ, USA

[g ]World Hepatitis Alliance, London, UK

[h ]University of California Berkeley School of Public Health, 2121 Berkeley Way, Berkeley, CA, 94704, USA

[i ]Clinical Research Department, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel St, London, WC1E 7HT, UK

[j ]Department of Global Health and Development, Faculty of Public Health and Policy, School of Hygiene and Tropical Medicine, 15-17 Tavistock Place, London, WC1H 9SH, UK

[k ]Africa Health Research Institute (AHRI), 719 Umbilo Rd, Umbilo, Durban, 4001, South Africa

[l ]PathCare Vermaak, Pretoria, South Africa

[m ]Nuffield Department of Medicine, University of Oxford, OX1 3SY, UK

[n ]The Francis Crick Institute, 1 Midland Road, London, NW1 1AT, UK

[o ]University College London, Gower Street, London, WC1E 6BT, UK

[p ]University College London Hospitals, 235 Euston Rd, London, NW1 2BU, UK

Author notes

[∗ ]Corresponding author. The Francis Crick Institute, 1 Midland Road, London, NW1 1AT, UK. philippa.matthews@ 123456crick.ac.uk

[1]

Equal contribution.

Article

Publisher Item ID: S2055-6640(23)00003-1 Publisher ID: 100317

DOI: 10.1016/j.jve.2023.100317

PMC ID: 9995934

PubMed ID: 36911657

SO-VID: 700fa205-c927-4c14-af53-c0636fc0e1a7

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This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

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

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SciELO South Africa

Most cited references 16

Research co-design in health: a rapid overview of reviews

Hepatitis B Virus: Advances in Prevention, Diagnosis, and Therapy

Progress towards elimination goals for viral hepatitis

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