The overall aim of health systems research is applied; to make a positive difference to policy and practice. This requires mutual understanding throughout the research process between researchers and implementers (governments, NGOs, and communities).
Strong respectful relationships – between investigators, between researchers and the communities and institutions that they work in, with policy makers, practitioners and other users of research – are key to research success and vital to ethical practice. In this section we have collected resources which illuminate how relationships can prompt ethical quandaries but also support identifying strategies to resolve them.
Some research projects are undertaken within collaborations or consortia which bring together implementing organisations from a number of countries or organisations. Parker and Kingori’s (2016) paper highlights for collaborative global health the importance of a series of factors that researchers see as essential in judging the merits of active participation in global health collaborations, including: respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. This and other papers highlight that collaborations and consortia are shaped by a range of power dynamics and imbalances which researchers should be mindful of. Pratt and Hyder (2016) provide a checklist that can be used by trans-national research collaborations to determine where their governance practices strongly promote equity and where they may fall short.
The paper by Crane et al. (2017) addresses the issue of capacity building (which many donors demand as a component of research partnerships). Often the flow of resources, skills and knowledge is assumed to flow from high-income countries to low- and middle-income countries within these frameworks. The paper explores how one capacity development intervention led to new risks and the weakening of local ownership and room for manoeuvre. It offers lessons for how these negative outcomes can be avoided.
The paper by Hyder et al. (2012) outline some of the ethical issues that come to the fore when researchers engage with low-resource communities over the longer term. These include: “fair benefits and long-term beneficence; community autonomy, consultation and consent; impacts on local health systems; economic impacts of research participation; ethical review processes; and institutional processes and oversight within research organizations.”
We have also included literature on ‘community engagement’ which is a package of interventions employed by research programmes to ensure that local views and beliefs are taken into account and ideally shape priorities and practice. These cover issues like consent, agenda setting and equity.
Working with Community Advisory Boards/Groups to support community engagement in clinical research on COVID-19
Information on establishing and working with different types of advisory groups and boards in the context of the COVID-19 pandemic.
The Oxford Global Health Bioethics Conference explored the current and future role and agenda of bioethics. This blog explores some of the themes of the conference with a health systems slant including: the role of bioethics in a changing world; ethical issues attached to community engagement, benefit sharing, equity, and capacity development, and human infection […]
Community engagement is gaining prominence in global health research. Growing consensus about the importance of community representation and participation for ethical research means research institutions and funding bodies now promote, or even mandate, engagement with communities as an important component of “traditional” non-participatory health research projects. In practice, however, global health research priority-setting is dominated […]
Good and Bad Research Collaborations: Researchers’ Views on Science and Ethics in Global Health Research
There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors […]
Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically […]
This study of a global health research partnership assesses how U.S. fiscal administrative policies impact capacity building at foreign partner institutions. We conducted a case study of a research collaboration between Mbarara University of Science and Technology (MUST) in Mbarara, Uganda, and originally the University of California San Francisco (UCSF), but now Massachusetts General Hospital […]
Exploring the Ethics of Long-Term Research Engagement With Communities in Low- and Middle-Income Countries
Over the past few decades, there has been increasing attention focused on the ethics of health research, particularly in low- and middle-income countries. Despite the increasing focus on the literature addressing human protection, community engagement, appropriate consent procedures and ways to mitigate concerns around exploitation, there has been little discussion about how the duration of […]
A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer four key questions: what are the […]
“The way the country has been carved up by researchers”: ethics and power in north–south public health research
Despite the recognition of power as being central to health research collaborations between high-income countries and low- and middle-income countries, there has been insufficient detailed analysis of power within these partnerships. The politics of research in the global south is often considered outside of the remit of research ethics. This article reports on an analysis […]
Defining Health Research for Development: The perspective of stakeholders from an international health research partnership in Ghana and Tanzania
The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline (GSK, Vaccine Developer) and the global health nonprofit […]