by Michelle Charette and Kennedy Opande
The Beautiful Brains Collaboratory team is set to embark on an ethnographic study of neurological practice in Kisumu, Kenya. The study is led by Dr. Denielle Elliott and postdoctoral research fellow Kennedy Opande, and will be conducted at Aga Khan Hospital (AGH) and Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu, Kenya. Our partners include Dr. Jules Nshimiyamana of AGH, Dr. Lee Ogutha of JOOTRH, and Dr. Patrick Owuor (Wayne State University). Michelle Charette, co-authored here, is leading the data collection in Toronto (for more information on this work, see Charette & Elliott 2023; Charette, Lima, and Elliott 2022).
Our team is interested in what we refer to as a “situated neurology,” informed by feminist STS scholar Donna Haraway (1988). We think about neurological practices as arising through the complex interactions that take place between individual actors and their socio-material surroundings. To better understand the local, situatedness of neurology, we are conducting research in Toronto (two clinics) and Kisumu (two clinics) where we can explore the types of knowledge that inform the clinical encounter between patient and clinician, the types of technological innovations used in the clinic for diagnoses, and how these inform dominant therapeutic interventions. Just as neuroscience is shaped by histories, political-economies, global geo-political flows, and pedagogical practices, we also think about the experience of neurology patients as localized, shaped by the diverse ecosystems within Kenya, biomedical infrastructure, but also urban infrastructure (like safe roads) or national power infrastructure (like the hydro-power energy grid).
Our study seeks to understand the terrain of the field of neurology in East Africa. We consider the transformations that have taken place in the field, which include tracking what kinds of neuro-technologies are utilised, how dominant ideas about brain injuries have changed (or not), are resisted, and made meaningful to those whose lives are most impacted by them.
Our research sites and partners
Aga Khan Hospital (Figure 1) is the largest private hospital in west Kenya, with a relatively new neurology clinic that caters to patients with epilepsy, cerebral malaria, and traumatic brain injuries, and other neuropsychiatric and neuro-degenerative conditions. Alongside JOOTRH, these facilities bear the heavy burden of diagnosing and treating neurological illnesses and trauma in the region. As a private hospital, AGH services are available to Kenyan citizens who can afford the relatively high fees for service. The AGH neurology clinic was set up and is run by Dr. Jules Nshimiyamana, a Rwandan neurologist who has moved to Kenya. The JOOTRH neurology clinic is managed by neurosurgeon Dr. Lee Ogutha, and is the largest public health facility in west Kenya region. It is a government-run hospital which offers a wide range of services from paediatrics to infectious diseases. Dr. Ogutha and the neurology ward specialise in conditions requiring neurological surgery – including brain injuries resulting from traffic accidents or assaults, brain tumours, and other neurological conditions requiring surgical intervention. Our team is particularly interested in moderate to severe brain injuries, acquired or traumatic, and the ways that those are diagnosed, tested, and treated in both Kenya and Canada.
Figure 1: Aga Khan Hospital, Kisumu, Kenya (Photo Credit: Kennedy Opande)
Neurology in Kenya
Neurology everywhere, including East Africa, is configured by global forces influencing medicine – including structural adjustment programs, global pandemics (like HIV and COVID-19) that drain the health system, and overseas medical training opportunities. Just fifteen years ago, the field of neurology was relatively undeveloped in Kenya. Kenyans wanting to study neurology were forced to find training in North America or the UK/EU. In fact, the first Kenyan neurologist was trained in Canada and started working at Kenyatta National Hospital in Nairobi in 1972 (Quereshi and Oluoch-Olunya 2010). This is compounded by the publication bias felt by African neuroscientists (Besharati and Akinyemi 2023). And yet, at the same time, the capacity for international co-authorship is associated with research visibility (Maina et al. 2021), which creates a catch-22.
A recent study shows that across Africa, interest in neurology is low, which may be bolstered by the burnout and the aforementioned challenges. Some have gone so far as to coin this as “neurophobia” (McDonough et al. 2022). Unlike other familiar phobias, such as arachnophobia (fear of spiders), or aerophobia (fear of flying), both of which can be logically rejected via thought experiments (“it’s more afraid of you than you are of it!”), neurophobia makes perfect sense given these challenges and how they might affect the goals and identities of neurologists, in the process of providing care. Care, as feminist scholars Puig de la Bellacasa (2017) and Tronto (1993) have pointed out depends on much more than one’s intellectual intention. Care takers lay their roots most successfully in supportive environments. To care is to both provide and require support from ones’ local and global community.
Motor vehicle accidents put many East Africans at high risk of brain injuries due to unsafe roads and a heavy reliance on largely unregulated public transportation (matatus with no seat belts, overcrowding, and night driving). Yet, most research in East Africa focuses on epilepsy, HIV related dementia, and age-related dementia. Even among these foci, research indicates that there is limited human resources for addressing such conditions across Africa (Adebaya et al. 2020), and that there is large variability in services across countries, particularly in relation to the ratio of specialists to patients. For example, severe traumatic brain injuries often require surgical intervention. But as neurosurgical training and accreditation take a long time, the overwhelming clinical need for neurosurgeons, and the availability of neurosurgeons, are out of sync. Santos and colleagues suggest that there are numerous challenges facing neurosurgery in East Africa, including the burden of surgical disease paired with workforce crisis, lack of education in various communities, and “brain drain”, that is, the outflow of scientists from their home countries.
Indeed, “the harsh reality is that only a handful of countries have been successful in luring their talented émigrés back home” (Cervantes and Guellec 2002, 41). This has also been true in the Kenyan context. Today there are over 15 institutions offering training in neurology and neurosurgery in East Africa (Kenya, Tanzania, and Uganda); many of these institutions work in collaboration with colleges from the US and elsewhere to increase opportunities for training. There are over 22 hospitals in Kenya alone with neurologists or neurosurgeons on staff – from the Nairobi Hospital to Tenwek Hospital in Bomet. But there remains a disparity in the number of neurologists between African nations and European ones - 0.03 neurologists per 100,000 people in Africa, versus 8.45 per 100,000 in Europe (Steinmetz et al. 2024). This research comes at an important time as techno-scientific actors in richer countries increasingly seek to “innovate” neuroscience with even more costly and unsustainable technologies. Consider, for example, the use of artificial intelligence and machine learning to read and re-use data from MRI and CT scans from patients with epilepsy, multiple sclerosis, dementia, and other neurodegenerative diseases (Vinny, Vishnu, and Padma Srivastava 2021). We worry that hype surrounding such technologies distracts from pre-existing health inequities and exploitation. Such disparities are often co-opted by techno-scientific actors as providing reasonable grounds for intervention. But these interventions further strip local economies, for instance, by replacing human resources with technologies, and using agricultural land to build datacentres. These datacentres are environmental egregious, contributing more than the airline industry to our carbon footprint (Monserrate 2022). The future of international programs that impact situated Kenyan neuroscience requires the attention of those who are not in the business of innovating, but of fostering, the local communities, and their environments. Follow our posts here weekly as our project moves forward.
Works Cited
Adebayo, Philip B., Omar M. Aziz, Rose E. Mwakabatika, Mandela C. Makakala, Mugisha C. Mazoko, Shabbir M. Adamjee, Noureen Mushi, Ahmed M. Jusabani, and Eric Aris. 2020. “Out-Patient Neurological Disorders in Tanzania: Experience from a Private Institution in Dar Es Salaam.” eNeurologicalSci 20 (September): 100262. https://doi.org/10.1016/j.ensci.2020.100262.
Bean, James Richard. 2018. “International Neurosurgical Care: Attending to Those in Need.” World Neurosurgery 112 (April): 322–24. https://doi.org/10.1016/j.wneu.2018.01.167.
Besharati, Sahba, and Rufus Akinyemi. 2023. “Accelerating African Neuroscience to Provide an Equitable Framework Using Perspectives from West and Southern Africa.” Nature Communications 14 (1): 8107. https://doi.org/10.1038/s41467-023-43943-3.
Cervantes, Mario and Dominique Guellec. 2002. "The Brain Drain: Old Myths, New Realities." Organisation for Economic Cooperation and Development.the OECD Observer (230) (01): 40-42.
Charette, Michelle and Denielle Elliott. 2023. “Sensing the Afterlife: Multisensorial ethnography and injured minds.” In The Routledge International Handbook of Sensory Ethnography, Edited by Phillip Vannini. NY: Routledge.
Charette, Michelle, Elizabeth Lima, and Denielle Elliott. 2022. “Sonic Stories, Sensory Ethnography, and Listening with an Injured Mind.” Multimodality & Society 2 (2): 165–73. https://doi.org/10.1177/26349795221084144.
Haraway, Donna. 1988. “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective.” Feminist Studies 14 (3): 575–99. https://doi.org/10.2307/3178066.
Maina, M. B., U. Ahmad, H. A. Ibrahim, S. K. Hamidu, F. E. Nasr, A. T. Salihu, A. I. Abushouk, et al. 2021. “Two Decades of Neuroscience Publication Trends in Africa.” Nature Communications 12 (1): 3429. https://doi.org/10.1038/s41467-021-23784-8.
McDonough, Annie, Lorraine Chishimba, Mashina Chomba, Stanley Zimba, Naluca Mwendaweli, Melody Asukile, Mataa M. Mataa, and Deanna Saylor. 2022. “Neurophobia in Africa: Survey Responses from Fifteen African Countries.” Journal of the Neurological Sciences 434 (January): 120161. https://doi.org/10.1016/j.jns.2022.120161.
Monserrate, Steven Gonzalez. 2022. “The Staggering Ecological Impacts of Computation and the Cloud.” The MIT Press Reader(blog). February 14, 2022. https://thereader.mitpress.mit.edu/the-staggering-ecological-impacts-of-computation-and-the-cloud/.
Puig de la Bellacasa, María. 2017. Matters of Care: Speculative Ethics in More than Human Worlds. Posthumanities 41. Minneapolis: University of Minnesota Press.
Samia, Pauline, Jane Hassell, Jessica-Anne Hudson, Maureen Kanana Murithi, Symon M Kariuki, Charles R Newton, and Jo M Wilmshurst. 2019. “Epilepsy Diagnosis and Management of Children in Kenya: Review of Current Literature.” Research and Reports in Tropical Medicine 10 (June): 91–102. https://doi.org/10.2147/RRTM.S201159.
Santos, Maria M., Mubashir M. Qureshi, Karol P. Budohoski, Halinder S. Mangat, Japhet G. Ngerageza, Karsten Schöller, Hamisi K. Shabani, Micaella R. Zubkov, and Roger Härtl. 2018. “The Growth of Neurosurgery in East Africa: Challenges.” World Neurosurgery 113 (May): 425–35. https://doi.org/10.1016/j.wneu.2018.01.084.
Steinmetz, Jaimie D, Katrin Maria Seeher, Nicoline Schiess, Emma Nichols, Bochen Cao, Chiara Servili, Vanessa Cavallera, et al. 2024. “Global, Regional, and National Burden of Disorders Affecting the Nervous System, 1990–2021: A Systematic Analysis for the Global Burden of Disease Study 2021.” The Lancet Neurology 23 (4): 344–81. https://doi.org/10.1016/S1474-4422(24)00038-3.
Tronto, Joan C. 1993. Moral Boundaries: A Political Argument for an Ethic of Care. New York: Routledge.
Qureshi, M. M., and D. Oluoch-Olunya 2010 History of Neurosurgery in Kenya, East Africa. World Neurosurgery 73(4): 261-263.
Vinny, P.W., V.Y. Vishnu, and M.V. Padma Srivastava. 2021. “Artificial Intelligence Shaping the Future of Neurology Practice.” Medical Journal Armed Forces India 77 (3): 276–82. https://doi.org/10.1016/j.mjafi.2021.06.003.