Building relationships

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 (MGH). Our case study is based on three of the authors’ experiences directing and working with this partnership from its inception in 2003 through 2015. The collaboration established an independent Ugandan non-profit to act as a local fiscal agent and grants administrator and to assure compliance with the Ugandan labour and tax law. This structure, combined with low indirect cost reimbursements from U.S. federal grants, failed to strengthen institutional capacity at MUST. In response to problems with this model, the collaboration established a contracts and grants office at MUST. This office has built administrative capacity at MUST but has also generated new risks and expenses for MGH. We argue that U.S. fiscal administrative practices may drain rather than build capacity at African universities by underfunding the administrative costs of global health research, circumventing host country institutions, and externalising legal and financial risks associated with international work.

Crane J.T., Andia Biraro I., Fouad T.M., Boum Y. 2^nd and R. Bangsberg D. (2017) The ‘indirect costs’ of underfunding foreign partners in global health research: A case study, Glob Public Health. 2017 Sep 16:1-8

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 the research engagement may affect the ethical design and implementation of studies. In other words, what are the unique ethical challenges when researchers engage with host communities for longer periods (10 years or more), and what special considerations does this time commitment generate when applying ethical principles to these kinds of studies? This article begins to outline key areas of ethical concern that arise during long-term, sustained research activities with communities in low-resource settings. Through a review of the literature and consultations with experts in health systems, we identified the following key themes: 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 hope that this preliminary exploration will stimulate further dialogue and help inform ethical guidance around long-term research engagements in the developing world.

Hyder A.A. et al. (2012) Exploring the Ethics of Long-Term Research Engagement With Communities in Low- and Middle-Income Countries. Public Health Ethics (2012), 5 (3): 252-262

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 best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?

We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach.

We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrolment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement.

Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

Domecq J.P., Prutsky G., Elraiyah T., Wang Z., Nabhan M., Shippee N., Brito J.P., Boehmer K., Hasan R., Firwana B., Erwin P., Eton D., Sloan J., Montori V., Asi N., Abu Dabrh A.M. and Murad M.H (2014) Patient engagement in research: a systematic Review, BMC Health Services Research201414:89

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 of power in north–south public health research, using Zambia as a case study.

Primary data were collected in 2011/2012, through 53 in-depth interviews with: Zambian researchers (n = 20), Zambian national stakeholders (n = 8) and northern researchers who had been involved in public health research collaborations involving Zambia and the global north (n = 25). Thematic analysis, utilising a situated ethics perspective, was undertaken using Nvivo 10.

Most interviewees perceived roles and relationships to be inequitable with power remaining with the north. Concepts from Bourdieu’s theory of Power and Practice highlight new aspects of research ethics:

• Northern and southern researchers perceive that different habituses exist, north and south – habituses of domination (northern) and subordination (Zambian) in relation to researcher relationships.
• Bourdieu’s hysteresise ffect provides a possible explanation for why power differentials continue to exist. In some cases, new opportunities have arisen for Zambian researchers; however, they may not immediately recognise and grasp them.
• Bourdieu’s concept of Capitals offers an explanation of how diverse resources are used to explain these power imbalances, where northern researchers are often in possession of more economic, symbolic and social capital; while Zambian researchers possess more cultural capital.

Inequities and power imbalances need to be recognised and addressed in research partnerships. A situated ethics approach is central in understanding this relationship in north–south public health research.

Walsh A, Brugha R, and Byrne E (2016) “The way the country has been carved up by researchers”: ethics and power in north–south public health research, International Journal for Equity in Health, 2016, 15:204

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 organisation PATH and its Malaria Vaccine Initiative program (PATH/MVI, Funder-Development Partner), (RTS, S) (NCT00866619). The respondents included teams from four clinical research centres (two centres in Ghana and two in Tanzania) and various collaborating partners. This paper analyses responses to the question: What is Health Research for Development? Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context – map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development.

Ward CL, Shaw D, Anane-Sarpong E, Sankoh O, Tanner M, Elger B (2017) Defining Health Research for Development: The perspective of stakeholders from an international health research partnership in Ghana and Tanzania, Dev World Bioeth. 2017 May 3