Analysis and data sharing
Analysing data throws up a number of ethical dilemmas for health systems researchers; many of which have already been raised and discussed in the earlier sections of this resource, including having to carefully consider the physical and socio-political positions of researchers which have implications for the entire research process, including analysis, and the importance of considering collaborators and research impact in analysis plans.
An important consideration for all health research, and particularly for an applied field like health systems research, is to ensure that findings feed into more equitable policy and practice in health systems; to ensure maximum social benefit from the research. The research-policy-practice interface at local, national and global levels is far from straight-forward however, with significant time and proactive effort needed to ensure that research findings make their way into the world of policy making. At local and national levels, having research findings heard is often dependent on relationships initiated long before and far after the completion of research.
Ghaffar et al (2017), highlight the value of embedded research approaches to strengthening the uptake of research findings in policy and practice. They highlight the importance of developing institutional set-ups and relationships that contribute to local transformation. Theobald and Nhlema-Simwaka (2008) explore the role of applied social science research in encouraging the uptake and use of research findings in Malawi. The paper by Gilson and McIntyre (2008) draws on research from Kenya and South Africa and prompts reflection on the ways in which policy makers can utilize research evidence as well as the importance of trusting relationships in this exchange.
A related consideration that is gaining growing attention globally is about sharing of data, including if and how to allow others to access and analyse data. Sharing data can support the impact of health system research through ensuring that it is as widely drawn upon and used as possible. But it comes with ethical dilemmas at many levels, including in relation to equity in which researchers contribute and gain from data being shared, how these complex processes are perceived by individuals and institutions, and how the integrity of the initial research endeavour is maintained.
The paper by Waithira et al. (2019) provides advice on the creation of a data management policy as a first step towards sharing.
When it comes to data sharing contestations can occur between collaborators as explored in the paper by Heeney (2017) below. Bull et al (2015) suggest that, “An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.” Questions about the transparency of the research process and the appropriateness of data sharing policies when applied to qualitative research have prompted some of these reflections (Tsai et al., 2016).
Through their analysis of the views of research stakeholders in Kenya, Jao et al. (2015) found that ethical data sharing was underpinned by strong and trusting relationships which enabled the co-construction of notions of risks such as stigma, loss of privacy, autonomy and misuse of data. They suggest that building an engagement infrastructure within the research process not only assists scientists in negotiating ethical practice but also increases the likelihood of the take up, use or translation of research in policy and practice decision making. Given the importance of relationships to data analysis and sharing some of the community engagement resources in the section on Building relationships may also be useful as you think through how to analyse the data that you have collected.
There are very few resources that look specifically at the ethics of health systems research communication. We have included a paper by George et al. (2015) that explores how a health systems photo competition brought up issues of power, gender and subjectivity. Graham et al. (2019) use three case studies to advocate for a more human interaction through conscious global health visual policy and photography. The paper by Mootz et al. (2019) focuses on planning ethical dissemination strategies with communities while communicating about the findings of research. They conclude:
“The fluctuating nature and significance of ethical principles produced identifiable tensions when it came time to disseminate findings. One particular tension arose between collecting data using safe and unharmful methods and distributing research findings equitably. Another ethical issue concerned transparently sharing findings of problems in a hopeful and contextualized way that would facilitate community action to address problems.”
What role can health policy and systems research play in supporting responses to COVID-19 that strengthen socially just health systems?
To say that we live in turbulent times is a massive understatement. COVID-19 ruthlessly exposes the fault lines of health services and systems, and the responses put in place to prevent its spread or mitigate its effects may affect people more than the actual infection. The outbreak in Wuhan quickly grew to a pandemic that […]
Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda
Gender-based violence (GBV) is a major public health problem that is exacerbated in armed conflict settings. While specialized guidelines exist for conducting research with GBV, guidance on disseminating findings from GBV research is scant. This paper describes ethical considerations of designing and disseminating research findings on GBV, armed conflict, and mental health (including alcohol misuse) […]
This article explores the relationship between ethics and the production of global health photographic images. Through the text, we emphasize the need for greater awareness of potential ethical pitfalls, not just in relationship to the finished product of the image but also throughout the full photographic process. In order to do so, we present and […]
Snap shots from a photo competition: what does it reveal about close-to-community providers, gender and power in health systems?
In this commentary, we discuss a photography competition, launched during the summer of 2014, to explore the everyday stories of how gender plays out within health systems around the world. While no submission fees were charged nor financial awards involved, the winning entries were exhibited at the Global Symposium on Health Systems Research in Cape […]
Health-related research funders, regulators and journals expect that de-identified individual-level health data be shared widely, with as few restrictions as possible; yet, in reality, the volume of shared data remains low. Health researchers and other data producers are reluctant to share their data unless they are confident that their datasets are of high quality and […]
We argue that embedding of research in real world policy, practice and implementation is needed to strengthen health systems worldwide. Embedded research conducted in partnership with policymakers and implementers, integrated in different health system settings and that takes into account context-specific factors can ensure greater relevance in policy priority-setting and decision-making. Ghaffar A., Langlois E.V. […]
The research, policy and practice interface: Reflections on using applied social research to promote equity in health in Malawi
The case for research to promote equity in health in resource poor contexts such as Malawi is compelling. In Malawi, nearly half of all the people with tuberculosis cannot afford to access free tuberculosis services. In this scenario, there is a clear need to understand the multiple barriers poor women and men face in accessing […]
Increasing attention has been paid in recent years to efforts to strengthen the impact of research on policy in low- and middle-income countries. However, the processes by which such research might have policy impact remain a subject of debate. This paper presents an analysis of the research/policy interface, drawing on the experiences of two South […]
This study draws on interviews with forty-nine members of a biomedical research community in the UK that is involved in negotiating data sharing and access. During an interview, an interviewee used the words ‘‘ethical moment’’ to describe a confrontation between collaborators in relation to data sharing. In this article, I use this as a lens […]
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests […]