Promoting diversity and access to care and education - MDS 40th Anniversary

Today we're joined by Dr. Jonathan Carr, who's the divisional head of neurology at University of Stellenbosch in Cape Town, South Africa, and has been a member of the Society for 25 years. And Dr. Njideka Okubadejo, who is a professor of neurology and consultant neurologist at the College of Medicine at University of Lagos and Lagos University teaching hospital in Nigeria, and has been a member for 22 years. And as you can tell, they're both from the African section. So [00:01:00] welcome. Thank you so much for joining us today.

Dr. Jonathan Carr: Thank you so much.

Dr. Njideka Okubadejo: Thank you.

Dr. Sara Schaefer: All right, so let's go back 20-25 years and talk about why you joined the society. Do you wanna start? 

Dr. Jonathan Carr: I think that would be roundabout the millennium. And it wasn't to protect me from the millennium bug, but I would've been living in my sister-in-law's basement in North Vancouver doing a kind of a fellowship at the University of British Columbia with Donald Colne and John Stossel.

And I do remember, I think flying down to, if I've got it right, San Diego that year from Vancouver, and I doubtless became a member then probably to get a reduced rate, but I think that would be the reason.

Dr. Sara Schaefer: All right, and Njideka, what about you?

Dr. Njideka Okubadejo: I was doing some work with colleagues at the Mayo Clinic in Rochester, [00:02:00] Minnesota. And at that time I actually was not aware that there was an MDS. But then in the course of my sort of relationship with colleagues in Rochester, they told me there was this MDS conference that was coming up and I was very excited to join.

So that's how come I started attending the MDS and then joined as a member. And it was upon joining the MDS that I realized just how incredible a society was in terms of the number of people who were focused entirely on Parkinson's and movement disorders and just the depth of expertise there was within the society.

So that's how I got there and got enamored, so to speak.

Dr. Sara Schaefer: And I'm sure the society has changed a lot in the past 22, 25 years. How has the society changed over time and how has it impacted your careers? Njideka. 

Dr. Njideka Okubadejo: You're very right about the [00:03:00] changes that have taken place over what I'd say two decades plus. The earlier years after I joined. So one, I think the most significant for me, I think is the improvement in the diversity of membership of the MDS.

So at the time I joined, there was no Africa section, but even apart from having a specific section, there was very limited attendance from people with movement disorders interest from the African region. So that's one thing, and maybe we'll come back to discuss how that happened. At the time I think the MDS membership from the African section was something like 0.01%, if at all.

That has changed and not just for the Africa section. I think that there's much more diversity in terms of the numbers of members from different world regions, especially what we like to call the underrepresented [00:04:00] regions. That's one. The other thing is the diversity in the professional representation within MDS.

So we've seen over the years that whereas initially it was mainly neurologists or movement disorders specialists, we've seen an increase in the number of other people that are involved in the multidisciplinary care of people with Parkinson's disease. So we've seen an influx of basic neuroscientists, allied health professionals, and not just as members, becoming more engaged with the society.

And then I think most recently is the interest in also hearing the patient voice as part of the MDS. So that's also something that has changed over time. The third and final thing I'd like to highlight is the educational content. At the congresses has changed I think for many practicing clinicians in a positive direction.

So I think for me, the earlier years were quite daunting in terms of just the amount of basic neuroscience content at the Congresses [00:05:00] and just the relatively lower content that was relevant to clinical practice in those earlier years. I think over the years things are a bit much more balanced and we have more content that is relevant to practicing clinicians.

Dr. Sara Schaefer: And how do you think it's impacted your career?

Dr. Njideka Okubadejo: So in terms of my career, this I've said this before, the single most important career decision that I made was joining the MDS, and that's because from where I was practicing. I had no movement disorders mentorship, I had no access whatsoever to any advanced movement disorders education.

I had no colleagues to reach out to if I had difficulties with managing patients. I was severely constrained even in doing movement disorders research because my position was an academic research and clinician position and still [00:06:00] is. But being a member of the Movement Disorder Society exposed me to first the educational content, but also to the expertise of colleagues in the MDS and to opportunities for continuing professional development.

And so in the absence of a formal movement disorders educational training or certification. It afforded me the opportunity to continue to build my skillset and also gain the confidence to even begin to influence others in my sphere of influence. So residents working with me, other neurologists encourage them to become interested in movement disorders.

And I can really proudly say that we have a moving, constantly expanding, team of movement disorders enthusiasts within my country and across Africa that have just become because of exposure to the MDS. Yeah, single most important career decision I made.

Dr. Sara Schaefer: Wonderful that sort of [00:07:00] spoken wheel of influence, right? Exponential growth of influence. Jonathan, same questions to you. How has the society changed in your view over time and what's been its impact on your career?

Dr. Jonathan Carr: I always bear in mind the famous photograph of five or six white men sitting in a hotel, I think in Berlin. David Marsden, the late, and the other founders of the society, and I think that represented for a long time far too long, where the society was, as in dominated by Europe and North America. And I'm incredibly pleased to have been really a very tiny part of a quite significant and dramatic move to embrace the whole world.

And I really would like to name, and I hope this is fair. But previous President Victor Fung and Francisco Cardoso, I think were really [00:08:00] pivotal in getting that to happen and that's not a very long time. It's really a pleasure and a privilege to be part of the MDS primarily for that reason.

Because in a world where we are beset by troubles I find the MDS actually very reassuring. The voice of reason, the voice of science, and a voice that does not disregard people who are not white or from North America or Europe, but in fact actively embraces diversity.

So really incredibly pleased and privileged and honored to be part of the MDS in its current form and long by that last.

On the other hand, in recent years and as Njideka has mentioned, we started off with a task force and she and I sat down in a room, not sure which city in North America it was a couple of years ago and [00:09:00] told we would be running the new African section initially. So the African section is again a tribute to the direction of the Movement Disorder Society.

And it's been a great pleasure and privilege to be a part of that. The development of our section.

Dr. Sara Schaefer: So we've talked about the past, we've talked about the present. Let's talk about the future. What do you foresee for the future of the society? Jonathan, you wanna start?

Dr. Jonathan Carr: Okay. We do not have the sufficient representation from India and much of the east that we perhaps should have.

And there are, again, doubtless many complicated reasons for that. I think the one obvious benefit of AI will be the fact that we are a universe of nations and a universe of languages, and AI will be, and is currently on the education platform of the MDS is immensely helpful in terms of [00:10:00] translation.

And an issue that needs to be pointed out is, what are members' experience of the MDS and probably for the vast majority of members, they are financially not able, for reasons of work, for reasons simply that it's too expensive to attend a Congress. So the Congress needs to, it needs to be remembered that the Congress is for the select few, although again, the MDS goes a long way to support at attendance. But for many people it's very difficult. If the Congress is not a viable option for members. What do they have? They have the website and I think we need to really bear in mind that, not to emphasize this at the expense of personal interaction, but the website for perhaps most of our members is the major interaction between a member and their society and hopefully we'll see that continuing to advance.

Dr. Sara Schaefer: [00:11:00] And Njideka what about you? What do you see in your crystal ball?

Dr. Njideka Okubadejo: So the Movement Disorder Society's primary mission has been education and really positioning itself to be the leading provider of movement disorders education globally. So for the future, and I'd like to say the Movement Disorders Society has done that pretty well. For the future, I think that one of the challenges sustaining that momentum and leading the way in incorporating emerging technologies into movement disorders education. I know that we're facing dramatic, drastic changes where AI is becoming much more important and we either love it or hate it.

We all agree that we need to use it one way or the other. So I think that's one area where the Movement Disorder Society [00:12:00] is and probably will lead the way in showing us how we can use AI to advance movement disorders education.

The second area is the ongoing conversation about the diagnosis of Parkinson's disease and the needs to incorporate a biological framework into that diagnosis. So I think many of us were comfortable and happy over the years coming from underrepresented populations where we didn't have much access to technology to have clinical based diagnosis that we could deploy and feel confident that we were doing the same thing that was being done by colleagues all over the world.

But I think that the MDS as a responsive and scientific evidence-based society really has to step in to help us define and direct how we incorporate biological [00:13:00] markers into the diagnosis of not just Parkinson's disease, but also other movement disorders where this is becoming relevant. But also doing it in a way that meets the needs of its membership all across the world. So balancing the need for that scientific revolution with what would be a framework that doesn't leave behind people who don't have access to all those technologies. I think the MDS really has a key role to play in that it also has the advantage of being an umbrella for people from all over the world who can lend their voice to how a biological framework may work in their settings and how this may impact themselves as clinicians, but also their patients and so forth.

So I think that's one area. The other aspect is that, of course, over the years we've become aware that multidisciplinary care and a holistic approach to managing movement disorders is key. And so again, [00:14:00] the Movement Disorder Society has started to address that, like we said earlier, bringing in more people from a diverse professional perspective like Allied Health and so on.

So again, I think the MDS has a role in helping us define best ways or best practices for giving more holistic care or more multidisciplinary care to people with movement disorders. And the final one is I'm pretty excited about the MDS pivoting towards engaging the patients and their carers because, in a largely technology driven society it's very easy to forget what the bottom line is. And the bottom line is we're trying to improve the quality of care and outcomes that people, human beings with movement disorders receive. And so at the end of the day, it's really about the patient. And so it's exciting to find that the MDS is pivoting towards hearing that patient voice and that carer voice.

So [00:15:00] I'm excited to see how that plays out in the future.

Dr. Jonathan Carr: Sara, can I just quickly mention another initiative, which Njideka is intimately involved in? And that's again, from the top, from the leadership of the MDS attempts to enhance access to medication for Parkinson's disease. It may be difficult for people to believe, but the fact is the vast majority of patients perhaps in the world, certainly in Africa, do not have access to the most basic medicine.

And the biggest change that could bring about the maximum benefit would be simply to get them that cheap medicine. So Njideka is very involved in that. And I love to, there's a quote I always remember that Victor Fung said, which was, if we don't do it, who will? And completely on the money, it's our job.

There are are patients who are suffering, [00:16:00] immensely, because they don't have access to a simple, basic, cheap medicine and it's wonderful that the MDS is involved in that and sees that as its business. Really fantastic.

Dr. Njideka Okubadejo: Yeah. Thank you for bringing that up, Jonathan, it would be remiss not to mention that. And it really reflects the fact that over the years, over the past two, three decades, the MDS has become much more humane. And so sometimes we see these as mere initiatives.

So they're starting an Africa section, they're focusing on patient and carer engagement. They're talking about access to care, but it's also a demonstration of the fact that the MDS has become much more aware of the opportunity it has to be a humane society, and it's really heartwarming that this is something that's on the table.

Discussing issues around access to care all over the world, identifying regions of the world [00:17:00] where there's limited access to something as basic as levodopa, and then bringing together partners and stakeholders to try and address it, get to the root of it, and do something about it.

Dr. Sara Schaefer: What you're really saying is, the MDS has gone from a simply scientific organization to one that is engaged in advocacy and outreach and serves in global partnerships and as a community for all of the people that care for movement patients, whether it's physicians or non-physicians.

So that breadth of their scope is just growing and growing. 

Dr. Njideka Okubadejo: Yeah, and without losing that primary scientific role.

Dr. Jonathan Carr: It's an issue of emphasis and as Njideka referred to the emphasis has moved from making the Congress more viable and useful, perhaps for more of its members from a very purely, maybe somewhat competitive driven scientific approach to [00:18:00] one that's much more encompassing a bigger tent for everybody.

Dr. Sara Schaefer: So I wanna close by having each of you share an anecdote, a favorite memory, a best congress moment, inspiring connection that you made through the MDS. Something along those lines. I know you didn't get these questions ahead of time, so maybe you need a little bit of time to think about it. Anybody ready?

Dr. Jonathan Carr: Okay, I'll go. Is that right? So my favorite anecdote of all time, which has got nothing to do with the MDS, is there was a meeting in Miami and because I'm a poor South African. I took along my camp stove, which is a very nice camp stove. And it can run on any fuel you like.

So I arrived in Miami. I went to the local gas station and I put a bit of gas in the tank. And I bought some halloumi, 'cause I'm a vegetarian and there I had started cooking in my hotel room. And everyone who's listening to this is going, oh [00:19:00] my God, he's mad.

But anyway, and then the fire alarm went off because very unusually with the stove coarse clouds of black smoke came out of it. Doubtless 'cause I was using gas petrol. But, so the fire alarm went off. But the good news was nobody came to find out 'cause it was such a cheap, terrible hotel. And then the really good news was I went to the top of the hotel and finished cooking my halloumi and it was very good.

And that's my anecdote. Thank you.

Dr. Sara Schaefer: Um, I can

Dr. Njideka Okubadejo: Sorry. Sorry. You haven't met Jonathan, right? This your first encounter. 

Okay. That's all I'll say. 

Dr. Sara Schaefer: So, so that wasn't a surprise to you, it sounds like Njideka, that

Dr. Njideka Okubadejo: No, no.

Dr. Sara Schaefer: No surprises. Okay. What about you? What's your anecdote? 

Dr. Njideka Okubadejo: For me, my anecdote is it's really about evolution.

I don't know if you're aware. So this year for the first time we had, I think it's for the first time we had someone from the Africa section, or at least from Nigeria on the [00:20:00] stage during the grand rounds. And it was pretty exciting and a proud moment for me because this was Lara Ojo, my colleague and mentee, and my twin, so to speak academically.

Because just a decade prior to that, we would sit together in the video challenge or in the grand rounds and just look at each other, what the heck are they talking about? Because some of the cases were really weird and we had concluded like, some of these diagnoses were made in retrospect, there's no way they knew what genetic mutation this was at the time they were seeing them clinically.

Dr. Sara Schaefer: I am glad I'm not the only one. 

Dr. Njideka Okubadejo: And, but we didn't know who weren't the only one, 'cause everybody seemed pretty confident that they knew what was going on. And then to find that, over the years it's become much easier to follow what's going on in the grand rounds or the video [00:21:00] challenge. And to actually have one of us on that stage doing us proud was, again kudos to the MDS for the exposure and the educational offerings that have led us to where we are today.

Dr. Sara Schaefer: All right. Thank you both for joining me today and talking about your experience. 

Dr. Jonathan Carr: Thanks, Sara.