Epigraph Vol. 26 Issue 1, Winter 2024

Epilepsy research and funding in low-resource countries: Ethical issues and steps toward equity

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By Nancy Volkers, ILAE communications officer

Cite this article: Volkers N. Epilepsy research and funding in low-resource countries: Ethical issues and steps toward equity. Epigraph 2024; 26(1): 63-67.

Coined in 1990, the term “10/90 gap” refers to the fact that less than 10% of funding for health research goes towards health in lower-resource countries, where 90% of preventable deaths occur.

Epilepsy research faces similar challenges to research in other health conditions, but also some unique issues. A recent article by Pauline Samia and colleagues discussed many of these challenges as they relate to epilepsy research in low-resource countries.

The outside-in perspective

Pauline Samia
Pauline Samia

The outsider’s perspective, apparent across global health research, must be addressed, said Samia, chair of the department of pediatrics and child health at Aga Khan University, Nairobi. She noted that research funding often comes from external sources that have predefined topics and priorities. This can result in studies ill-matched to a region, culture, or community.

“When people generate research ideas, they do it from their own understanding,” she said. “So we need to generate our own initial data [in low-resource countries], data that guides people on our priorities. When funding calls are made in such a way that they do not address the main priorities in our country, it becomes difficult to engage with that agenda.”

It also is crucial for external researchers to discuss research priorities with local researchers in order to maximize relevance as well as partnerships, she said.

“For example, genetic epilepsies are important, but if that is not what is affecting people in a specific area, then the researchers in that area would not have the expertise or ability to lead in that type of research,” said Samia. This results in lopsided collaborations that limit ownership of the process by local researchers.

An outside-in perspective also has implications for addressing diagnosis and treatment gaps, said Samson Gwer, senior author of the article and a consultant pediatric neurologist and executive director of Afya Research Africa in Nairobi.

Any solution must consider the larger health care picture within the specific country, and how to work with it.

“We need to look at how possible solutions align with existing health systems and nuances in access to care that may not be apparent to somebody who's not in the system,” he said. “For example, for a European [researcher] who has experience with government-supported health systems, a solution is going to be oriented toward those health systems — which in Kenya are a shambles.”

Inequity in research opportunities

Providing opportunities for researchers from low- and middle-income countries (LMICs) is not only the right thing to do, but also leads to more effective and productive research, said Samia.

“It may be that researchers in low- and middle-income countries may not have as much experience as the person coming from a high-income country, but those researchers are the frontline people,” she said. “Inequities will always be there, but we have to try to level the playing field. Equity helps bridge the gap and makes it possible to conduct research that is context relevant and more acceptable to people, and the results may therefore be more easily assimilated and utilized by the communities that we engage with.”

Samia recalled past experiences in which the contributions of local researchers working collaboratively with visiting researchers were not recognized.

“When we’ve got researchers with better experience or a longer research career and they go into a new environment, ethically speaking they need to carry with them the researchers that they find on the ground and incorporate them in the recognition of the papers that come out of the research, and also in the recognition of their efforts, and rewarding that to some extent,” she said.

These rewards can be as basic as paying local researchers for their time.

“We need to educate researchers on the value of their time and the value of their contributions,” said Samia. “This is not common knowledge across academic institutions and research settings in low- and middle-income countries. So the first step is making people understand that this is how funding should be provided so that everybody’s contribution is recognized.”

A broken system

Gwer appreciates that many researchers from high-resource countries dedicate their careers to solving gaps in epilepsy care in lower-resource countries — and acknowledges that the lack of research capacity in lower-resource countries creates a vicious cycle.

Samson Awili Gwer
Samson Awili Gwer

“What the researchers find, quite often, is a system that is ill equipped,” said Gwer. “So then they take leadership of that process. They set themselves up in a country or setting and then they become the preferred collaboration contact for others, because they are familiar.”

Rather than addressing the limited resource capacity, this practice maintains it. “The system fails to provide an opportunity for indigenous scientists to get the chance to collaborate,” said Gwer.

A 2023 article analyzed the origins of research and authors from five major journals published in both 2000 and 2017. Comparing the two datasets, authors found that research contributions from the “rest of the world” (RoW) — countries other than the United States, Canada, Western Europe, Australia, and New Zealand — increased from 6.5% to 11.9%. About 88% of the world’s population lives in RoW countries.

Results from 2017 showed that of 727 original research papers, 33% included data from RoW countries. Of these, only 29% had a first author from the same RoW country; about 30% had a senior author from that country.

Studies cite lower-quality research as well as lower quantities of studies as factors contributing to the under-representation of RoW countries in the research literature. Behind both of these trends are many of the challenges mentioned by Samia and Gwer: financial and personnel limitations, a lack of research environment, regulatory constraints, language barriers, and conflicting time demands.

2017: 727 original research papers from five major journals
Used data from non-RoW** countries
Used data from a RoW country
First or senior author from the same RoW country
First and senior author not from the same RoW country
RoW= rest of world
*AIM, BMJ, JAMA, The Lancet, NEJM
**non-RoW countries: USA, Canada, UK, Australia, New Zealand, and European countries other than Albania, Belarus, Bulgaria, Bosnia, Czech Republic, Croatia, Hungary, Poland, Republic of Macedonia, Moldova, Montenegro, Romania, Slovakia, Russian Federation, Serbia and Ukraine

Research capacity and infrastructure

Increasing clinical capacity is a main goal of the Intersectoral global action plan on epilepsy and other neurological disorders — but increasing research capacity also is crucial, said Samia.

“Finding a way to train health care workers so that they can better contribute to research processes — that is due,” she said. “We need to engage in capacity building in epilepsy research. Trainees, fellows, those in residency training, even in the undergraduate programs, we need to start talking to them about research in epilepsy and why this is important, why this makes a difference.”

More resources for already-trained health workers would bolster research opportunities as well, said Gwer. Because specialized health workers in low-resource areas are in short supply, “a lot of individuals who are properly trained are overwhelmed,” he said. “There is a low priority on taking a step back to interrogate the practice environment and consider challenges and opportunities. They need a support system that gives them a break and supports them to be more efficient.”

Funding pathways

The pathways for securing research funding also must change, said Gwer. “The Matthew Effect is in play here: Those who need the funds the most will not get it, and those who have more of it will keep on getting it,” he said. “If such access was democratized and took into account considerations other than readiness to receive such funding and track record, then there may be an opportunity to avail funding across a wider range. How can funding opportunities be provided in a more innovative and objective way that supports the whole ecosystem?”

A 2022 survey by the US National Institutes of Health sought information on promoting equity in global health research. The survey received 186 responses from 46 countries. Respondents listed several barriers and challenges to equitable research in low- and middle-income countries (LMICs):

  • Limited funding opportunities for LMIC investigators
  • NIH grant requirements that involve significant administrative capacity
  • Differences in research priorities between funders and LMIC institutions
  • Inequities in research processes and in the roles and responsibilities of high-income country researchers and LMIC researchers
  • Lack of fair data sharing and ownership practices
  • Cultural differences

Respondents emphasized the importance of shared leadership in research partnerships, involving LMIC partners in all aspects of the process, and equity in roles and responsibilities.

They highlighted the need for addressing funding disparities, providing more funding opportunities for LMIC investigators, and supporting capacity strengthening in research methods and scientific writing.

Matthew Harris
Matthew Harris

Survey respondents also noted that the “publish or perish” culture in high-income countries means that little credit is given to faculty who seek international collaboration, mentor LMIC colleagues, or practice fair authoring. Equity in publishing is further complicated by an emphasis on publishing in high-impact journals, as well as journals with paywalls.

Research funding practices are beginning to change, said Matthew Harris, clinical senior lecturer in public health medicine at Imperial College London.

“The US National Institutes of Health recently stipulated that research grants for research that are taking place in Global South countries need to have Global South principal investigators,” he said. “And there needs to be an explicit concern for reciprocal innovation: This idea that's whatever is produced from that research partnership needs to be applicable also in the US.”

Also, said Harris, “I think people are beginning to pay a lot more attention to the role of indigenous monologues and the importance of that. I'm not sure we're yet seeing that move into the mainstream knowledge economy just yet, but it is beginning to.”