Choosing questions, study designs and methods
To know what work to put to ethics committees, decisions need to be made about what questions to ask and study designs to follow. For research to contribute to social justice, there must be careful consideration about what research questions are selected and by whom.
There is some concern that much funded research in low- and middle-income countries focuses on a narrow set of questions related to service delivery and scale up rather than on health system research that is responsive to local needs or focused on equity. Early and ongoing involvement of relevant stakeholders is vital to change this.
The paper by Sheikh et al. (2020) introduces the concept of a learning health system – health systems that, ‘effectively collect, use, and retain available knowledge and information’ and use evidence in decision making. Through a process where knowledge for decision making is co-constructed with researchers, policy makers and health staff, evidence can better meet the needs of health systems in low- and middle-income countries.
Participatory and embedded research approaches can support ensuring that researchers engage with the different communities they are working with, and that questions, analysis and communications products are built to suit the needs of users. As the paper by Sharp et al. (2017) explains, these methods also seek to capture tacit knowledge and the ‘voice’ of those who are often marginal in research outputs and communication and thereby help address epistemic and cognitive injustices. Participatory methods can afford proper respect to people as sources of information and explicitly acknowledge the right of different forms of knowledge to coexist.
However, as the paper by Khanlou and Peter (2005) explains these methods can also generate ethical quandaries which review boards are sometimes unfamiliar with. The more recent paper by Banks et al (2013) shares experience more specifically on everyday ethics in community based participatory research. The methods reader by Loewenson et al (2014) provides a comprehensive overview of different types of participatory action research with examples from around the world. The reader includes a chapter on the ethics of participatory research. Of interest to some readers may be Gatenby and Humphries’ paper on methodological and ethical issues in feminist participatory action research more specifically (2000).
For guidance on embedded research approaches and qualitative research more generally, we have included a paper by Richards and Swartz (2002).
Turning to implementation research, the resource by Morgan et al. (2016) outlines a process of analysing how gendered power relations influence the implementation of an intervention, as well as the extent to which the research process itself progressively transforms gendered power relations. The authors provide frameworks and critical questions which can be asked of implementation research projects. Tannenbaum et al.’s (2016) paper outlines methods for integrating a gender analysis within interventions, and the paper by Gopichandran et al. (2016) suggests that key ethical considerations in implementation research include meaningful engagement with all stakeholders, informed consent, careful consideration of risks and benefits, and the translations of knowledge to action. A training course by TDR and WHO’s Global Health Ethics team provides comprehensive guidance for researchers and ethics boards on implementation research. Rattani and Hyder (2016) add analysis of research subjects, units of intervention and observation, the nature of interventions and appropriate controls and comparisons to this list of issues to attend to.
Useful resources
Using scientific authorship criteria as a tool for equitable inclusion in global health research
Introduction In 1985, the International Committee of Medical Journal Editors (ICMJE) created a standardised set of criteria for authorship. The central principle underlying these criteria is that authorship is an intellectual activity that entails contributions to ideas (eg, conceptualising a study and framing the research question), analyses (eg, formulating the analysis approach/framework and/or performing the actual […]
Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities
To promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how […]
Learning health systems: an empowering agenda for low-income and middle-income countries
Institutions in high-income countries (HICs) are the main funders and generators of academic knowledge on health systems in low-income and middle-income countries (LMICs), and much too often this knowledge reflects their priorities rather than the needs of health systems in LMICs. This power imbalance between HICs and LMICs has been the focus of calls for reforms […]
Training course on ethics in implementation research
TDR and WHO’s Global Health Ethics team have jointly developed a training course for researchers and research ethics committees on the important ethical considerations in implementation research (IR). The course comprises six interactive modules interspersed with activities including case studies, role-play and quizzes: Module 1: Introduction to IRModule 2: Ethical considerations in IRModule 3: Ethical […]
How being appreciative creates change – theory in practice from health and social care in Scotland
This paper develops understanding of appreciative action research that generates curiosity and motivation as a better platform for collaborative change. Blending theory and practice it draws on the example of the My Home Life leadership programme in Scotland that explores the concepts and approaches of ‘Caring Conversations’ and ‘playful provocation’ in care homes for older people. The […]
Participatory action research: considerations for ethical review
This paper addresses the distinctive nature of participatory action research (PAR) in relation to ethical review requirements. As a framework for conducting research and reducing health disparities, PAR is gaining increased attention in community and public health research. As a result, PAR researchers and members of Research Ethics Boards could benefit from an increased understanding […]
Everyday ethics in community-based participatory research
This article explores a range of ethical issues that arise in community-based participatory research (CBPR), drawing on literature and examples from practice. The experience of CBPR practitioners adds further weight to the growing critique by many other social researchers of regulatory approaches to research ethics (which focus on rule following in accordance with research governance […]
Participatory action research in health systems: a methods reader
The purpose of the methods reader is to inform, motivate and strengthen the practice of participatory action research. It is organized in five parts and seeks to explain: Key features of participatory action research and the history and knowledge paradigms that inform it; Processes and methods used in participatory action research, including innovations and developments […]
Feminist participatory action research: Methodological and ethical issues
Close relationships between researchers and participants engaged in a feminist participatory action research project have brought joy and insight, but also challenges. Through the project we collaborate to enhance participants’ careers and, among some, develop feminist consciousness. In this paper we discuss methodological and ethical issues that derive from the closeness of the relationships between […]
Ethics of qualitative research: are there special issues for health services research?
An increasing volume of qualitative research and articles about qualitative methods has been published recently in medical journals. However, compared with the extensive debate in social sciences literature, there has been little consideration in medical journals of the ethical issues surrounding qualitative research. A possible explanation for this lack of discussion is that it is […]
Incorporating gender analysis into health systems implementation research
This chapter explores how gender analysis can be incorporated into health systems implementation research. This is the process of analysing how gendered power relations influence the implementation of an intervention, as well as the extent to which the research process itself progressively transforms gendered power relations, or at least does not exacerbate them. Gender is […]
Why sex and gender matter in implementation research
There has been a recent swell in activity by health research funding organizations and science journal editors to increase uptake of sex and gender considerations in study design, conduct and reporting in order to ensure that research results apply to everyone. However, examination of the implementation research literature reveals that attention to sex and gender […]
Developing the ethics of implementation research in health
Implementation research (IR) is growing in recognition as an important generator of practical knowledge that can be translated into health policy. With its aim to answer questions about how to improve access to interventions that have been shown to work but have not reached many of the people who could benefit from them, IR involves […]
Ethical considerations in health systems research
Based on the presumption that certain kinds of ethical issues may be particularly relevant to and salient in health systems research, this chapter explores several of these issues. We outline eight areas of ethical relevance that are particularly salient in health systems research (though not unique to health systems research) that may require special attention […]
