In a recent LinkedIn Live, Joost Rigter shared his deeply inspiring journey and valuable insights into accessibility in daily life and clinical research. Hosted by Derk Arts, the session delved into the challenges of navigating complex content for individuals with visual impairments and highlighted actionable ways the industry can do better.
Joost’s Story: Turning Challenges into Opportunities
Joost is a motivational speaker and social entrepreneur from the Netherlands. As an introduction, he shared his story about his progressive eye disease, retinitis pigmentosa, which gradually reduced his vision to just 0.8%. Despite this, Joost emphasized his focus on adaptation and positivity:
“It became clear to me that I didn’t have to read with my eyes, but to hear and listen to information.”
From struggling as a child to see the blackboard to building a career inspiring thousands, Joost demonstrated that perspective can transform limitations into opportunities. He has started his own company and delivers motivational speeches to over 40,000 people annually, focusing on themes like acceptance, trust, and connection.
The Reality of Accessibility in Clinical Research
The conversation shifted to how Joost navigates complex content, such as government letters, bank statements, and legal documents. For him, technology like voiceover tools and seeing AI have been critical in bridging accessibility gaps:
“When I point my camera at a letter, it reads it sentence by sentence. But a 40-page document? That’s still very difficult.”
Derk introduced the topic of Informed Consent Forms (ICFs) used in clinical trials. These documents, often 40+ pages long, are designed to inform participants about the study. However, they are notoriously complex, even for those with full vision. Joost’s experience revealed an unsettling reality—he often trusts others to explain the document and signs without fully understanding it:
“I trust it, and I sign… but for something like clinical trials, that’s a lot of trust.”
Innovation Through AI: Making Complex Content Accessible
A key moment in the conversation was the discussion around AI-generated podcasts, which transform dense, text-heavy documents into engaging, conversational audio formats. For Joost, this innovation is a game-changer:
“I was so happy with it. It made the document easier to understand, and I could listen to it on my own time.”
Joost emphasized how this approach could benefit a broader audience beyond visually impaired individuals, including those with low literacy or difficulty understanding complex texts. The ability to repeat, pause, and digest information at one’s own pace ensures a more informed and empowered decision-making process.
The Future of Accessibility in Clinical Trials
The conversation underscored a clear need for the clinical trial industry to prioritize accessibility from the ground up. Some key takeaways included:
– Simplify documents to ensure readability.
– Leverage AI tools to provide audio and conversational versions of critical information.
– Focus on human interaction—participants benefit from clear, verbal explanations from trusted professionals.
“We need to think of accessibility first, not as an afterthought,” Joost concluded.
Final Thoughts
Joost’s story is a testament to resilience and innovation. His journey reminds us that accessibility is not just about tools—it’s about creating systems that empower everyone. The clinical trial industry has an ethical responsibility to ensure that all participants, regardless of their abilities, can fully understand what they are consenting to.
As Joost aptly put it:
“It’s about looking at changes differently and finding ways to adapt. AI is helping me, and it will help so many others too.”
This webinar served as both a wake-up call and a vision for the future: one where technology bridges gaps, accessibility is the norm, and everyone has a fair opportunity to engage with critical information.