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.
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.
Ghaffar A., Langlois E.V. , Rasanathan K., Peterson S., Adedokunc L. and Tran N.T. (2017) Strengthening health systems through embedded research, Bull World Health Organ 2017;95:87 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, […]
The research, policy and practice interface: Reflections on using applied social research to promote equity in health in Malawi
Theobald S. and Nhlema-Simwaka B. (2008) The research, policy and practice interface: Reflections on using applied social research to promote equity in health in Malawi, Social Science & Medicine, Volume 67, Issue 5, September 2008, Pages 760-770 The case for research to promote equity in health in resource poor contexts such as Malawi is compelling. […]
Gilson L. and McIntyre D. (2008) The interface between research and policy: Experience from South Africa, Social Science & Medicine, Volume 67, Issue 5, September 2008, Pages 748-759 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 […]
Heeney C (2017) An ‘‘Ethical Moment’’ in Data Sharing, Science, Technology, & Human Values 2017, Vol. 42(1) 3-28 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 […]
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
Bull S., Cheah P.Y., Denny S., Jao I., Marsh V., Merson L., Shah More N., Nhan L.N.T., Osrin D., Tangseefa D., Wassenaar D., and Parker M. (2015) Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings, Journal of Empirical Research on Human Research Ethics, 2015, Vol. 10(3) 302–313 Sharing […]
Tsai A.C., Kohrt B.A., Matthews L.T., Betancourt T.S., Lee J.K., Papachristos A.V., Weiser S.D. and Dworkin S.L. (2016) Promises and pitfalls of data sharing in qualitative research, Social Science & Medicine, Volume 169, November 2016, Pages 191-198 The movement for research transparency has gained irresistible momentum over the past decade. Although qualitative research is rarely published […]
Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations
Jao I., Kombe F., Mwalukore S., Bull S., Parker M., Kamuya D., Molyneux S. and Marsh V. (2015) Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations, PLoS One, 2015, Sep 2;10(9):e0135545 There is increasing recognition of the importance of sharing research data within the international scientific community, but also […]
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, J Empir Res Hum Res Ethics
Jao et al. (2015) 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, J Empir Res Hum Res Ethics., 2015, Jul; 10(3): 264–277 Increased global sharing of public health research data has potential to advance scientific progress but […]