It can take a journey around the globe to see and address gaps in research. This has certainly been the case for Dr. Petrus de Vries. Dr. de Vries’ training in medicine started in South Africa. He moved to the UK to complete his clinical training and PhD in developmental neuroscience. He returned to Africa in 2012, and ever since has focused his research on global autism, neurodevelopmental and child & adolescent mental health, and implementation science in low- and middle-income settings. Dr. de Vries founded the Centre for Autism Research in Africa (CARA), and currently holds the position of Struengmann Professor of Child & Adolescent Psychiatry at the University of Cape Town.

Now, Dr. de Vries will add Toronto to his roster of worldwide travels to deliver the Mickey Milner International Professorship Keynote presentation at this year’s BRI Symposium. He will discuss the importance of building global communities of research to reduce research gaps.

Before he makes the long trip to Toronto, the Bloorview Research Institute spoke with him about his career in global research and the impact he’s seen.

What sparked your interest in the concept of global research? How have your own international experiences been eye-opening in addressing research gaps?

My research journey started in the 1990s when I was a PhD student working on learning and behavioural problems in tuberous sclerosis complex (TSC). I was immediately struck by two things – firstly, that most research was happening in only a few places (mainly in English-speaking countries), but secondly, that there was a real desire and passion in the TSC community to share and participate in research all over the globe. In rare diseases, in particular, there is great power in international collaboration to ensure that we understand the ‘big picture’ landscape. This was my introduction to the global world of research. For the next 10 to 15 years, I collaborated actively with colleagues in various countries. Together, we learned about similarities and differences (particularly in access to healthcare and other support) across countries and contexts.

What is the landscape of autism research like in South Africa? How are you seeking to raise awareness and champion research in this field?

I returned to South Africa in 2012 with the plan to set up a comprehensive program of research on autism and related developmental disabilities. At the time, there were no such programs anywhere in Africa. I knew that little autism research had been done on the continent of Africa but had no idea just how limited it had been.

When we did a scoping review to find all papers ever published in peer-reviewed journals about autism in sub-Saharan African countries, we found only 53 papers with 28 of them from South Africa (Franz et al, 2017).

In contrast, the global publications on autism at the time were in excess of 25,000, mostly from high-income countries. My concern grew when a global burden of disease paper showed that 95 per cent of children with developmental disabilities including autism live in low- and middle-income countries (LMIC) (Olusanya et al, 2018). It was a stark realization that we know almost nothing about the needs, priorities, pathways to care, education and support of most families who live with developmental disabilities. This is what really made me sit up and think about the global world of research and about the disparities and inequity of access to participation in research.

These rather scary observations became the inspiration and motivation for the research we do at CARA, which includes work on screening and diagnostic tools, accessible, affordable, and acceptable interventions, understanding and strengthening systems of care, and thinking about how we can use technology to reach and empower communities.

You mention that, perhaps paradoxically, global research can help to meet local needs. Could you provide examples of how you have seen global research impact in the local communities you work with?

Global research and using a global lens for our research can be a wake-up call (as it was for me) to recognize the urgency of building research where the majority of people live to ensure that we know what each community needs. Global research can be a tool for high-income and well-resourced teams to collaborate with colleagues in low-resource contexts to develop ‘research readiness’ so that high- and low-income countries can be equal participants in research.

Importantly, global research can also teach us about innovations that happen in low-resource contexts (because we have no other choice!) that could also be relevant and perhaps more appropriate and affordable in rich countries. I am very excited when I observe the younger generation of emerging researchers who are much more globally minded than their predecessor generation of researchers.

Global impact and personalized, equitable care are important to the Bloorview Research Institute. Those ideas are also the central tenant of this year’s Symposium. What’s a primary takeaway that people can expect from your keynote talk?

These are all very big words – global impact, personalized, equitable care. It is one thing to say it and quite another to actually ‘do’ it (or perhaps better to say ‘live it as a value’).

One of the key messages from my talk is: if we really want to have a global impact and support individuals to receive the equitable care they need, we need to understand those local communities: their desires, values, principles, and preferences.

This cannot happen by ‘parachuting’ research from rich countries into poor countries. It can’t happen when there are vast power differentials between collaborating institutions and teams.

True global research is an active, participatory, respectful and co-creating process. Our research needs to leave more behind than it takes away. If we can get that philosophy right, our global research can indeed be transformative to local communities.

Register now to attend the 18^th annual BRI Symposium!