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.”
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 […]
The movement for research transparency has gained irresistible momentum over the past decade. Although qualitative research is rarely published in the high-impact journals that have adopted, or are most likely to adopt, data sharing policies, qualitative researchers who publish work in these and similar venues will likely encounter questions about data sharing within the next […]
Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations
There is increasing recognition of the importance of sharing research data within the international scientific community, but also of the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research. Public involvement is essential to building locally responsive research policies, including on data sharing, but little […]
Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement
Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative […]