Inspiration from World Parkinson Congress 2023

Bringing clarity for both my professional aim to create diversity in clinical research and for my personal journey as a Caregiver for Parkinson’s

Jul 11, 2023

During the past 18 months in my work on Health Equity, I have been exploring opportunities to help increase ethnic diversity in clinical studies. This problem is well understood conceptually but has major challenges in practice. This isn’t only a US problem as this 2022 report outlines. It is a global opportunity to achieve a vision for both Personalised Health and Health Equity.

It was in late 2022 that I also found out that my father-in-law, Steven, was diagnosed with Parkinson’s Disease (PD). This neurodegenerative disorder afflicts more than 10 million people around the world. As seen here, Steven is a high-performing Masters Swimmer based in Malaysia who has a passion for life, exercise, travel, and family time.

Upon learning about his diagnosis, my wife and I adopted a role as individual caregivers, better known in Parkinson’s as Care Partners or Care Advocates. Professionally, I also focused on exploring whether I could create greater diversity for clinical studies, specifically for Neurodegenerative Disorders. Could my efforts lead to changes in research? In addressing infrastructure challenges? In education and advocacy? In ending Parkinson’s?

Enter the 6th annual World Parkinson’s Congress, held last week in Barcelona.

About World Parkinson Congress

Although it worked for me to a) read books including Ending Parkinson’s Disease by Ray Dorsey, Todd Sherer, Michael Okun, Bastiaan Bloem, b) review the wealth of resources from foundations such as The Michael J. Fox Foundation & Cure Parkinson’s Trust, and c) listen to the Health Unmuted Parkinson’s podcast series by Mission Based Media, my approach isn’t for everyone, especially for individuals that haven’t worked in the business of health for 20+ years.

After learning that WPC brings together 3,500+ other attendees from over 60 countries, I was intrigued. Not only because of the clinical focus but because WPC puts PD patients and their families at the centre of the event. Here are the stats from the two prior events.

Throughout the 4-day event, Global Foundations, Academic researchers, Product manufacturers, and Service providers gather to share the latest information, breakthrough innovations, and - most important - allow everyone to intermingle to support PD. A memorable moment was the raucous greeting all attendees received after the opening ceremony – including all 6 of us who attended from my Asian family, including Steven.

My Key Takeaways

It would be a disservice to the collective hard work of all the attendees who exchanged ideas and information for me to attempt a comprehensive summary. WPC can likely provide a complete archive.

But for my dual objectives of a) Care Partnering and b) Diversity in Clinical Studies, here are three critical ones:

I: The promise of an objective biomarker for PD may be within reach

The cause of Parkinson's symptoms is not from one single disease. And unfortunately, today's only option is a post-mortem autopsy. As a result, there isn't an objective way to know the exact underlying condition.

But in April 2023, MJFF's press release cracked the door for a new future. This news - which they proudly displayed in their booth at WPC - detailed the exciting results from their 10-year-old ground-breaking study, the Parkinson’s Progression Markers Initiative. Along with their GP2 study, these two global programmes are helping to explore the foundations of PD.

This announcement is meaningful because it establishes the foundation for precision medicine in PD – the ability to understand the disease sub-types. Read the link or listen to this podcast from Larry Gifford, a gregarious and joyful person I met at WPC to learn more.

II: Addressing Health Equity is a priority for the global community

Because my father-in-law lives in Southeast Asia, the patients' infrastructure and clinical journey completely differ from what individuals experience in the US and Western Europe.

Over the past six months, I've been exploring what it means in Singapore and Malaysia to help support greater diversity. I took my hypotheses to WPC, and as I explained my theory for Southeast Asia, I was overwhelmed by the collaborative and generous feedback offered by the teams from Parkinson's Africa, the Parkinson's Society of India, Parkinson’s Canada, the Brian Grant Foundation, and of course, from the Michael J. Fox Foundation, and the Cure Parkinson's Trust.

These organisations helped validate that my efforts could be helpful, including a major goal for enabling Asia – and hopefully my Asian family - to become part of global studies such as PPMI.

III: WPC inspired my Asian family

Before the event, my wife’s family lacked access to the wealth of existing information on Parkinson’s in Western countries. But after four days of the event, they all left informed and inspired based on being able to sit in on numerous talks from experts, review some of the thousands of posters presented by innovators, and vendor booths from companies big and small. Most important, they spoke directly with other people living with Parkinson’s and clinicians who happily shared their perspectives and experience from caring for other patients.

My father-in-law Steven summed it up best when he said, “I have a positive outlook for my future” as we stepped out of the exhibit hall at the end of the 4th day.

What’s next for Parkinson’s in Asia Pacific?

Based on my learnings from WPC, I feel energised that my ecosystem approach for change can be impactful for people studying, living with, and supporting those with neurodegenerative disorders. Specifically, I aim to address the following challenges through partnerships with existing organisations and explore new paths forward in 5 areas:

Patient education: How can localised and literacy-relevant content be provided to anyone with Parkinson’s or other Neurodegenerative disorders?
Policy and Private Sector Investment: How can public and private sector awareness and participation be increased for Parkinson’s or other Neurodegenerative disorders?
Patient Advocacy: How to amplify the voice of patients with Parkinson’s?
Clinical infrastructure: How can current efforts from Asia-based public health, academia, and the private sector be more active in global studies?
Funding: Where can new Asia-based resources help address financial gaps in Neurodegenerative research and care?

I’ll send future updates on my Parkinson's business building journey to address these challenges. If you are already working on these and want to collaborate, please contact me via email or LinkedIn.

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