Global neurology: Pitfalls and purpose - Dr. Melody Asukile and Dr. Deanna Saylor

With all the best intentions, undertakings in global neurology can include assumptions and biases that lead to unforeseen negative consequences. Sharp Waves spoke with Drs. Melody Asukile and Deanna Saylor about their recent article on the perils and pitfalls of global neurology. They discussed specific examples of some of these unforeseen consequences and talked about the ingredients for productive, ethical, and sustainable global neurology initiatives.

Resources:
Asukile M et al. The Perils and Pitfalls of Global Engagement (JAMA Neurology)

Global Neurology: Advancing Neurological Care Worldwide (YouTube)

DiBiase R et al. Evaluation of Three Cohorts of the First Neurology Postgraduate Training Program in Zambia (P4-8.001) (Neurology)

Zambia League Against Epilepsy

Epilepsy care in Zambia: “Now that we have neurologists, we will have a voice” (ILAE Sharp Waves episode)

Intersectoral global action plan on epilepsy and other neurological disorders (World Health Organization)

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

Let us know how we're doing: podcast@ilae.org.

The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, X (Twitter), Instagram, and LinkedIn.

Transcript

Please see links to referenced papers and organizations in the show notes.

[00:00:00] Nancy Volkers: With all the best intentions, undertakings in global neurology can include assumptions and biases that lead to unforeseen negative consequences. Sharp Waves spoke with Dr. Melody Asukile and Dr. Deanna Saylor about their article, The Perils and Pitfalls of Global Neurology, published in March 2024 in JAMA Neurology. Drs. Asukile and Saylor discuss some of these unforeseen consequences and talk about the ingredients for productive, ethical, and sustainable global neurology initiatives. They also discuss the impact of Zambia's new neurology training program, established in 2018, on neurology and epilepsy care in that country. 

So, it's great to have both of you here on this episode of Sharp Waves. And I was wondering if you could each sort of introduce yourselves and where you are and what you do. And maybe we could start with Dr. Asukile.

[00:00:57] Dr. Melody Asukile: Hi! Thank you very much for this kind invitation, and hello to everyone who's listening. I'm Melody Asukile. I'm an adult neurologist and epileptologist in Zambia. I'm also one of Zambia’s first neurologists.

[00:01:12] Dr. Deanna Saylor: Hi, everyone, and thanks for the invitation to be here. My name is Deanna Saylor. I'm an associate professor of neurology at the Johns Hopkins University School of Medicine, but for the past seven years, I've spent the majority of my time working in Zambia, helping to develop a neurology training program and neurology clinical services. 

[00:01:32] Rachel Lea: Thank you both. So, I'm curious, what does the term global neurology mean to each of you, and how does it fit into the field of neurology as a whole? 

[00:01:44] Dr. Melody Asukile: For me, “global neurology” means the practice of the neurological sciences in a manner that is considerate of diverse populations and landscapes.

So, when I think of global neurology, I usually think of it in two broad categories. So that is research and education, and also, healthcare access. So, I believe the practice of global neurology—that's neurology that's looking on the international scale—should promote research and education capacity in resource limited settings. And I also think it should ensure that it results in independent local researchers and neurologists whose impact on their society will continue long after international support is gone. And, similarly, when it comes to international support of healthcare systems, I think this should be appropriate for the population. It should adapt to the situation or the environment, and it should be sustainable.

[00:02:41] Dr. Deanna Saylor: Thanks, Melody. I think that's hard to add anything to that definition. So maybe rather than add or change the definition, I'll just acknowledge that I think “global neurology” is a bit of a biased and maybe loaded term. I think that we use it as a proxy for saying “the practice of neurology in low-resource settings.”

Really, “global neurology” means that there's neurology happening around the globe in a diverse amount of settings. But I think in reality, when we talk about global neurology, what we're really referring to is neurology in lower-resource settings, often with less specialized expertise in existence.

[00:03:24] Nancy Volkers: Thank you both; excellent points. So, I'm going to continue to use the term global neurology, although now I'm thinking we should call it something else. But I absolutely agree. 

So, we're talking about your paper, which was The Perils and Pitfalls of Global Neurology. So, one aspect of global neurology does involve training, which is either people coming from a higher-resource country to a lower one or vice versa. And of course, there are many productive outcomes of that type of training, but maybe Dr. Saylor, could you give us an example of some unintended negative consequences of that training?

[00:04:00] Dr. Deanna Saylor: Sure, and I think this is such an important topic and one that's close to my heart and work. You know, I moved to Zambia to start the first neurology training program in the country that trained Zambian neurologists, and I think that there are ways to develop training programs like this that are really good and genuinely build capacity. And there are a lot of ways to do it poorly in either direction. 

So, for example, when neurologists or neurology residents from higher-income settings go to a lower-resource setting to practice, oftentimes they arrive in the lower-resource setting where there may not be any other neurologists or specialized neurology expertise. And they often arrive with the attitude that they are the expert who's coming to teach everyone, but they arrive in a setting where they're unfamiliar with the epidemiology, with the local resources available to diagnose and manage conditions, with how those conditions are managed in the local setting, and are really practicing in a setting that is completely unfamiliar to them.

And so, as a result, they can make bad decisions. They often don't have the humility to learn from the local non-experts who practice in that setting all the time. And so, I think there's a lot of unintended consequences that can include poor use of resources, misdiagnosis, and worse patient outcomes when it's not done well.

In addition, trainees are often asked to practice outside of the scope that they would usually practice in when they arrive in a lower-resource setting. And so, they're doing things that they would not be allowed to do in their home country, but now in this new setting are suddenly being asked to do. And so, I think there's a lot of potential for unintended consequences there. 

If we then think about the opposite situation, where trainees or a specialist physician—anyone from a lower-resource setting—going to a higher-resource setting, I think some potential unintended consequences could be brain drain. You know, if someone decides that they want to go to a higher-resource setting to do their neurology training, even with the best of intentions of returning to their home country, they may discover that the salary and the opportunities available in the higher-resource setting are hard to turn down after you've spent four or five years in that place. And then they don't actually end up returning to their home country and building capacity. 

And even if they do, they sometimes come back to a lot of frustration that the systems that they trained in and the resources they had when they trained are not available. Sometimes there's no real job for them to plug into because that hasn't been planned for and catered for. And so even if they do return, they often become frustrated and maybe leave the public sector—work for private NGOs (non-government organizations) or private hospitals—or return back to the country where they trained. 

And so, I think a lot of thought has to be put into how to make these exchanges successful in both directions.

[00:07:11] Rachel Lea: So, in other cases, well intended donations of equipment or medication can result in frustration or a waste of resources. Dr. Asukile, can you give a few examples?

[00:07:23] Dr. Melody Asukile: So, I think for me, one example that comes to mind when I think of well-meaning, but perhaps not very well thought out collaborative efforts, is the donation of previously used, but functional diagnostic equipment.

So, when done correctly and I think following proper planning, this can work out really well. But then at times, this is often done without a careful analysis of the expertise of the recipients to use the equipment. And also, there's often no long-term plan with regards to servicing and software management. 

So usually you'll find, after undergoing a really rigorous process of getting that equipment imported into the country, then it is soon discovered that there's no one who's trained to use it. It requires regular purchase of consumable products that may not be available locally. And also, often when the machines are sent, the service plans for those machines might not extend to the receiving country, and the software that you need to use for the machines is proprietary. This means that you're not allowed to make any updates or any modifications. So usually you'll find that, once these machines are finally received, then they are often packed away because they are unusable. 

So, I think it's very important to consider sustainable plans for local machine service use and long-term access to consumables. And at times, those who are donating might find that it might be more sustainable if you aid an institution, for example, to purchase equipment they can actually use, and that might be more cost effective for them. Or if a good plan is put in place to ensure that these machines will actually be useful, and there are examples of such situations as well.

[00:09:06] Nancy Volkers: Thank you, Dr. Asukile. So, on a more positive note, could each of you maybe talk about what an equitable, ethical, sustainable collaboration in global neurology might look like? Either something that you've experienced or something it can be idealized, something that you wish would happen, or something that has happened that had positive results?

Dr. Saylor, would you like to start? 

[00:09:31] Dr. Deanna Saylor: Sure. And thank you for the opportunity to talk about the possibilities—the many good things that can come out of these collaborations—, because I think that, in general, the vast majority of global health collaborations are well intentioned. And so, making people aware of the potential downsides and the principles that need to be thought about before they're entered into can just help to make them successful and beneficial in both directions. 

And I think for me, equitable and meaningful global health collaborations are really based on two principles. 

The first is that, in general, the collaborating individual or group from the higher-resource setting really needs to come into the partnership as the listener and the learner. The idea is generally that there's going to be some sort of collaboration built to meet the needs of the lower-resource setting, and it's not for the person or the organization in the higher-resource setting to decide what those needs are. And so, I think the first principle is just that it's sort of a reversal of what is often assumed. It's that the experts from the higher-resourced institution or setting needs to come in as the learner as the listener and really be open to finding out what the needs and expectations are of the partner in the lower-resource setting. They're the experts in their setting. They're the experts in what is needed, and if that is how the collaboration is built, then that sets a strong foundation for making sure that the resulting collaboration is successful and bi-directional and has positive benefits. 

And I think the second principle that comes along with that is that global health collaborations are just like any other relationship: they take time, and they require trust building. You know, no relationship starts out with 100% trust in each other, and that trust isn't built in a day or a week or one trip. And so, I think that it's important for the individual or institution from the higher-resource setting to go into a collaboration thinking that they're in it for at least longish term. It might not be, you know, years and years, but certainly more than one visit. 

And it's unrealistic to have an expectation that you're going to arrive in the other setting and just have a perfect, you know, wonderful time the very first time you meet and start building something. And so, really going into a collaboration with the long view that you're committed or the institution is committed to identifying needs and building that relationship over time, building that trust over time with repeated visits and repeated demonstration of commitments, I think is really, really essential.

[00:12:24] Nancy Volkers: Melody, do you have anything to add or any examples? 

[00:12:28] Dr. Melody Asukile: I think, for me, a good relationship is when we've got international support in a low-resource setting, I feel at the end of that relationship, you want to see outcomes where the individuals that you are helping are able to carry on, even once the aid is gone.

So, it's where there's true capacity building with regards to research. So, you leave researchers who are independent. You leave education programs that sustain themselves. You have administrative structures in place that are able to carry on the work that was built on that foundation. I think, for me, that's what a good collaboration looks like.

[00:13:10] Nancy Volkers: Great. Thank you. 

[00:13:13] Rachel Lea: Yeah, both of you brought up a lot of good points. So, is it unrealistic to focus on one neurological condition, such as epilepsy, in global collaboration, or are there opportunities focused on epilepsy as a gateway to improved neurology as a whole?

[00:13:29] Dr. Melody Asukile: Yeah, so this is an important question, and I think this is something that we've been thinking about globally as well. So neurological disorders are many and diverse. However, I think with any global health effort, it does sometimes help to target a common condition which serves as a prototype strategy for others. So, in neurology, I think conditions like epilepsy and stroke are identified as among the commonest conditions. And recently, the World Health Organization, through the IGAP—that's the Intersectoral [Global] Action Plan on Epilepsy and other Neurological Disorders—the WHO decided that epilepsy was probably a good condition to start with and serve as an example of how neurological disorders should be approached and managed.

So, I do think it's okay. If we're thinking on a large scale, and we're trying to improve neurologic service, I think it's okay to work with a certain condition, see what works, see what doesn't, and then try to scale that up to the others.

[00:14:33] Dr. Deanna Saylor: I mean, I agree with Melody in that the fact that IGAP has really raised the profile of epilepsy and neurological disorders in the global health space in general. Because epilepsy is such a high prevalence disorder everywhere in the world, it is often a good starting point to start building neurological capacity. And capacity is built around epilepsy, that can then spill over to other neurological disorders as well. 

I think my caveat here, sort of going back to the last discussion, is it needs to be the identified need of the partner organization as well. So, if they're telling you that we have a huge burden of epilepsy, and we don't know how to manage it, or we're not sure how to improve outcomes, then that's a great starting point. But if they're telling you their priority is stroke, then proposing to focus on epilepsy is probably not the best way to start. But I do think that epilepsy, stroke, dementia, these are kind of really high-burden, highly prevalent disorders all across the world and so are often good starting points and launch pads for starting to build that neurological capacity that can then be transitioned to other areas as well.

[00:15:47] Nancy Volkers: Excellent. Thank you. So, I'd like to segue a little bit into the neurology training program in Zambia, which is fairly new. I believe it was started in 2018. Dr. Asukile, we’ll start with you. As one of the first graduates of the program, can you describe your perspective on the impact of the program, public awareness, professional awareness, epilepsy knowledge, training, and care that are particularly top of mind for you?

[00:16:19] Dr. Melody Asukile: So, I think, just to start, I think the Zambia Specialist Neurology Training Programis a really good example for me of global neurology education collaboration that has worked really well. So, the collaboration was between the Johns Hopkins University and the University of Zambia and the Ministry of Health, and it was led by our very own Professor Deanna Saylor. And it has not only created a self-sustaining local neurology training program, which is now six years old, but it's also now becoming a regional training center, and we currently have three international trainees. 

So, prior to 2020 when we first graduated, Zambia had no Zambian neurologists, and now in the last four years, we've grown to 12 Zambian neurologists with more coming soon. So, what we see is the trained are now becoming the trainers, and that's how the program is sustaining itself. 

And what's also really great about this program is it's tailor-made for our settings, so you are training residents in their own or at least in their similar environment, but at the same time you are maintaining the high standards of care that are accepted globally.

So how has this changed epilepsy care? We've now got specialists where there were none. So, this has improved access to patients getting an appropriate diagnosis and management of their epilepsy. Further on, as our group is growing, we are very active in training healthcare workers and the public on epilepsy and management. So, some of these Zambian neurologists, myself included, we've formed a local chapter of the International League Against Epilepsy—the Zambia League Against Epilepsy—and through this association, we're providing training to healthcare workers. We're collaborating with patient advocacy groups to raise awareness about epilepsy. 

So, I think just from the training program, we've seen a big spillover effect and really not just for epilepsy, but all neurologic disorders. I'll just touch on diseases as well, like multiple sclerosis, where very little times that diagnosis was made in Zambia. But as we see a growth in neurologists, we are seeing diagnoses that were often unheard of being made, because now you have specialists to recognize these conditions. And once the diagnosis is made, that's the first step for someone to get appropriate treatment. So, the impact is huge, I believe, and it's going to get bigger.

[00:18:49] Rachel Lea: Thank you. Dr. Asukile. That's incredible, and I'm glad that the program is so successful. Dr. Saylor, you moved to Zambia to help start this training program. What are your thoughts on the impact so far?

[00:19:03] Dr. Deanna Saylor: I have to say that the impacts are beyond what my wildest dreams were when I moved to Zambia. You know, I had hoped to train a few neurologists who hopefully could help a few patients, but it’s just been incredible to see the team grow and continue to grow and just be really dedicated to the mission and the vision of improving care for patients with neurological disorders across the country.

Melody mentioned that we've graduated 12 neurologists, and all 12 of them have remained in the public sector, serving the most vulnerable patients. And we've now started to see that not only do we have neurologists where we train, which is at the national referral hospital in the capital city, we now have neurologists at four other hospitals throughout the country and in different provinces. And so, we're starting to see delocalization of capacity as well so now you don't have to travel to the capital city to access specialist care. We're starting to see provincial hubs developed too and neurology clinics pop up in these provincial hospitals as well, so that more and more patients have access to appropriate care. 

And then, as Melody mentioned, we're training international trainees from other countries in Sub-Saharan Africa. So, even though they're not training in their home countries, they're training in an environment with similar resources, similar epidemiology, and then they're going to return to their home countries.

And we hope that our program can then continue to support them to start training programs in their home countries, so that the next neurologist from these countries doesn't need to come to Zambia to train but can be trained in their home country. And so, we’re really starting to see neurology training capacity built throughout the region and see the Zambia neurology program is sort of the regional hub and center of excellence for neurology training, which is really, really exciting as well. 

And just seeing, you know, the statistics that we have from the research that we're doing has just shown a huge impact in patient outcomes. Stroke, for example. Before the neurology training program was in place, in-hospital stroke mortality was 48%, and over the past seven years, we've cut it to less than 10%. And so, really making a tangible difference in lives saved and then burden and morbidity associated with conditions as well. 

So, it's just been a really, really exciting time to be a part of Zambia neurology. I’m really, really proud of the amazing team that is so committed to the work that we do to building the program, to building clinical services, to building research capacity, and just continuing to advance and improve neurological care across the country. It's a really, really exciting place to be. 

[00:21:53] Nancy Volkers: Thank you. Huge congratulations to the team on that.

It just made me think when you were talking about neurology that, if I'm not mistaken prior to this, many cases of epilepsy were treated by mental health professionals. So, I'm wondering if the establishment of the neurology training program is helping—if you can see if it's changing the stigma at all or the understanding of epilepsy as a neurological condition and sort of away from mental health or maybe some of the supernatural overtones that maybe people were thinking before. I know it's only been six years but just a thought, if you've noticed any of that. 

[00:22:37] Dr. Melody Asukile: Yeah. I think, as you've said, time is really short, but we have noticed that we are getting more referrals to our neurology clinic, because we do have a specialized neurology clinic. And we are also trying to raise awareness, trying to train doctors about epilepsy, trying to train other health care workers. 

But historically, epilepsy has been managed by mental health units and psychiatry. And even now, as we speak, a large proportion of our epilepsy patients are still seen in mental health units. But this is something that we're trying to work on, trying to raise awareness, I think, especially even at Ministry of Health levels, for example, and just trying to change that narrative. But I think it will take time for people to change that mindset from what they've always known for a long time. But yeah, I think it's changing, but it's going to take some time.

[00:23:33] Nancy Volkers: Thank you. So, could each of you share some advice or wisdom that you've gained over your career that might help younger folks or even not so younger folks who are interested in research in global neurology or global neurology clinically? What could you tell them that would help them on their journey?

[00:23:55] Dr. Deanna Saylor: Maybe I can start. You know, as I reflect on my own career and being involved in “global neurology” now for, you know, going on 20 years, I can absolutely say that it is by far the most rewarding thing that I've done in my career and that the opportunities to make really huge impacts are there, often with few financial resources. So, it's not necessarily that there needs to be a huge investment of money or new equipment. It's really training and education and investment in people. And so, it’s a lot of your time resources and your energy resources, but it doesn't take a huge financial investment.

And not only is there a potential for huge impact external to you, but I know that I have grown certainly as a person and as an individual from being in cross-cultural settings and learning from colleagues all over the world. But I'm also a much better neurologist from being exposed to disease and multiple different settings and a wider array and range of disorders as well. And so, I just think that there's a lot of opportunities for your own professional growth, but really, really to make an outsized impact with just an investment of your time and your energy and your passion as well. And there's nothing better than just having colleagues from all over the world that you can grow and learn from and enjoy and become friends with. So, I think it's certainly a really, really rewarding career and when done well can have a really huge impact.

[00:25:33] Nancy Volkers: Thank you. Dr. Asukile?

[00:25:37] Dr. Melody Asukile: I think, for me, my recommendation to anyone engaging particularly in global epilepsy care is to have, as we've talked about over and over again, a bi-directional mindset. I think if you're engaging in thinking globally, you should be willing to listen and learn as much as you're willing to give. So, even when I'm thinking about treatment and research, I want to think about work that will yield results that can have a meaningful impact across diverse settings. I also think about solutions that can adapt to different situations and at the same time will be self-sustaining. 

[00:26:21] Rachel Lea: Thank you, Dr. Asukile. So, is there anything either of you would like to add before we end our conversation for today?

[00:26:29] Dr. Deanna Saylor: I don't think I have anything else to say other than thanks again for the opportunity to talk about this important topic and share our experience. It’s really been fun to be here.

[00:26:41] Dr. Melody Asukile: I just want to say thank you as well. In our paper, we talked about all the things that could go wrong, but then we've also seen a lot of things going well recently. I think a lot of people are learning how to create some of these good collaborations that we've talked about. And so it's really encouraging, and we do encourage more people to engage in global neurology and in global epilepsy care. 

[00:27:07] Nancy Volkers: Thanks so much to both of you for being here with us today. We really appreciate your time and all your hard work. 

[00:27:15] Rachel Lea: Yes, thank you so much.

[00:27:16] Dr. Deanna Saylor: Thanks. Take care, everybody.