Global Health Research and Participation: Listening to the Voice of Communities

By Renaud Boulanger and Arisa Goldstone for The Toronto Globalist

Imagine a world where everyone benefits from new diagnostics, vaccines, drugs and other life science solutions. Between October 17 and 21, 2009, some of the most talented biomedical researchers convened to discuss this vision in Arusha, Tanzania, for the fifth annual Grand Challenges in Global Health (GCGH) meeting. This meeting marked the fourth anniversary of the GCGH initiative, a program funded by the Bill and Melinda Gates Foundation (BMGF) that seeks to improve the health of people living in the developing world. As part of this initiative, 44 international research teams have been tasked with addressing the scientific bottlenecks that are thought to most significantly hold back major advancements towards global health. Such bottlenecks include the cold chain required for vaccines, the challenge of finding drugs that can eliminate latent infections, the difficulty of controlling populations of disease-transmitting mosquitoes, and the lack of point-of-care diagnostic systems that could rapidly and cheaply test for common infections and health problems. At the meeting, principal investigators and their teams presented their early findings and update their colleagues on their progress. The McLaughlin-Rotman Centre for Global Health (MRC), an academic centre at the University of Toronto and the University Health Network that works at the nexus of translational research, the developing world and entrepreneurship, and uses scholarly research to help move technologies from the lab to the village, sent a strong delegation to this GCGH meeting.

Photo by Remy Steinegger, Couresty WEF

Aware that GCGH investigators would inevitably face ethically-, socially- and culturally-unchartered areas as part of their work, the BMGF has mandated the MRC to provide ethics-centered advisory services to its 43 grantees. This service is part of our Ethical, Social and Cultural Program (ESC) for the Grand Challenges in Global Health and the aim of our team is thus to help GCGH researchers anticipate, mitigate and address the ESC issues that threaten the critical path from discovery to delivery. By doing so, we work towards our common vision of a world where everyone benefits from new diagnostics, vaccines, drugs and other life science solutions. Already, research findings from the MRC have proven to be a critical component in the success of numerous global health research projects.

The Bill & Melinda Gates Foundation quickly acknowledged the importance of addressing Ethical Social and Cultural issues that arise as part of biomedical research…

With an estimated ten billion dollars committed in global health grants, the BMGF is now an undeniable player in global health. As a relative newcomer to the field, the BMGF quickly acknowledged the importance of addressing ESC issues that arise as part of biomedical research. Such interest in the impact of ESC issues on global health projects has increased worldwide, in parallel with the internationalization of biomedical research. For example, other major international funders, such as the Wellcome Trust, are also realizing the importance of better understanding the mechanics of community engagement in biomedical research. However, one component of the ESC issues associated with biomedical research that remains understudied is community engagement, which is defined as the “process of working collaboratively with and through groups of people affiliated by geographical proximity, special interest, or similar situations to address issues affecting the well-being of those people.”

A US Army doctor in Uganda provides dental care in a humanitarian clinic. Photo by Samara Scott, CC2.0.

Despite increasing interest in community engagement, the academic literature remains remarkably silent on how communities can successfully be engaged. Evaluations of community engagement projects have been limited and they remain elusive as to what makes community engagement effective. However, as part of the initial development of the ESC Program for the GCGH at the MRC, we identified community engagement as an overarching issue that would impact the success of all GCGH projects. We were mandated to conduct a series of global case studies to document effective practices of community engagement. We have chosen to use qualitative methods to explore the perspectives of ‘Southern voices’ on community engagement. This includes determining from research participants, communities and researchers what they consider to be good practices of community engagement. We aim to translate our findings into a set of guidelines that GCGH investigators will implement in order to more successfully engage with communities. By engaging communities in more appropriate and active ways, we believe the efforts and resources committed to eradicating grand challenges in global health will be more successful.

Certainly, the opinion that biotechnological solutions to health problems should be linked to the lack of access to basic resources like nutrition, clean water and housing abounds and is valid. However, facilitating active and authentic participation in research projects will further help ensure that invested resources truly improve the lives of participating communities. Ultimately then, the increasing commitment to address ethical, social and cultural issues in international biomedical research promises to help researchers and companies get their life science technologies to those who need them in the developing world.

Renaud Boulanger and Arisa Goldstone are research assistants at the McLaughlin-Rotman Centre for Global Health.