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.
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 […]
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 […]
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 […]
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 […]
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 […]