Developing World Bioethics
December 2016 Volume 16, Issue 3 Pages 121–180
Special Issue: Ethics of Health Systems Research in Low and Middle Income Countries
Ethical Issues in Health Systems Research in Low and Middle-Income Countries (pages 122–123)
Paul Ndebele and Adnan A. Hyder
Version of Record online: 11 NOV 2016 | DOI: 10.1111/dewb.12126
A Scoping Study on the Ethics of Health Systems Research (pages 124–132)
Abdulgafoor M. Bachani, Abbas Rattani and Adnan A. Hyder
Version of Record online: 1 APR 2016 | DOI: 10.1111/dewb.12117
Currently, health systems research (HSR) is reviewed by the same ethical standards as clinical research, which has recently been argued in the literature to be an inappropriate standard of evaluation. The issues unique to HSR warrant a different review by research ethics committees (RECs), as it does not impose the same risks to study participants as other types of clinical or public health research. However, there are limited tools and supporting documents that clarify the ethical considerations. Therefore, there is a need for additional reflection around ethical review of HSR and their consideration by RECs. The purpose of this paper is to review, understand, and synthesize the current state of literature and practice to inform these deliberations and the larger discourse on ethics review guidelines for HSR. This paper presents a review of the literature on ethics of HSR in the biomedical, public health, and implementation research to identify ethical considerations specific to HSR; and to identify examples of commonly available guidance and/or tools for the ethical review of HSR studies. Fifteen articles were identified on HSR ethics issues, and forty-two international academic institutions were contacted (of the responses (n=29), no institution had special ethical guidelines for reviewing HSR) about their HSR ethics review guidelines. There appears to be a clear gap in the current health research ethics discourse around health systems research ethics. This review serves as a first step (to better understand the current status) towards a larger dialogue on the topic.
Understanding Health Research Ethics in Nepal (pages 140–147)
Jeevan Raj Sharma, Rekha Khatri and Ian Harper
Version of Record online: 3 FEB 2016 | DOI: 10.1111/dewb.12109
Unlike other countries in South Asia, in Nepal research in the health sector has a relatively recent history. Most health research activities in the country are sponsored by international collaborative assemblages of aid agencies and universities. Data from Nepal Health Research Council shows that, officially, 1,212 health research activities have been carried out between 1991 and 2014. These range from addressing immediate health problems at the country level through operational research, to evaluations and programmatic interventions that are aimed at generating evidence, to more systematic research activities that inform global scientific and policy debates. Established in 1991, the Ethical Review Board of the Nepal Health Research Council (NHRC) is the central body that has the formal regulating authority of all the health research activities in country, granted through an act of parliament. Based on research conducted between 2010 and 2013, and a workshop on research ethics that the authors conducted in July 2012 in Nepal as a part of the on-going research, this article highlights the emerging regulatory and ethical fields in this low-income country that has witnessed these increased health research activities. Issues arising reflect this particular political economy of research (what constitutes health research, where resources come from, who defines the research agenda, culture of contract research, costs of review, developing Nepal’s research capacity, through to the politics of publication of data/findings) and includes questions to emerging regulatory and ethical frameworks.
Health Systems Research Consortia and the Promotion of Health Equity in Low and Middle-Income Countries (pages 148–157)
Bridget Pratt, Katharine A. Allen and Adnan A. Hyder
Version of Record online: 16 MAR 2016 | DOI: 10.1111/dewb.12116
Health systems research is widely identified as an indispensable means to achieve the goal of health equity between and within countries. Numerous health systems research consortia comprised of institutions from high-income countries and low and middle-income countries (LMICs) are currently undertaking programs of research in LMICs. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Recent conceptual work has explored what features might be necessary for health systems research consortia and their research programs to promote health equity. Identified features include selecting research priorities that focus on improving access to high-quality health services and/or financial protection for disadvantaged populations in LMICs and conducting research capacity strengthening that promotes the independent conduct of health systems research in LMICs. Yet, there has been no attempt to investigate whether existing consortia have such characteristics. This paper describes the results of a survey undertaken with health systems research consortia leaders worldwide to assess how consistent current practice is with the proposed ethical guidance. The findings suggest that consortia may be fairly well organised to promote health equity, but have scope for improvement, particularly in terms of achieving inclusive priority-setting.
Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya (pages 168–177)
Sassy Molyneux, Benjamin Tsofa, Edwine Barasa, Mary Muyoka Nyikuri, Evelyn Wanjiku Waweru, Catherine Goodman and Lucy Gilson
Version of Record online: 4 OCT 2016 | DOI: 10.1111/dewb.12130