Putting Patients First: From Language to Real-World Evidence in Myasthenia Gravis Research

You’ve been part of Vitaccess’ journey from localisation into leading commercial relationships. What have been the biggest turning points for you, and for the company, during that time?  

I’ve been on the Vitaccess rollercoaster since the start-up days to now being a successful international real-world evidence company. It’s been fun to ride the waves and enjoy the perks of small company life such as remote-working flexibility and really getting to know everyone up to the CEO personally. You also naturally get involved in different areas of the business, which creates fantastic opportunities for learning and professional growth and gives you a much broader perspective on how a business really operates.

The biggest turning point for me personally has been really getting behind our mission: creating a patient-centric, science-driven company that puts patients at the heart of everything we do. For Vitaccess, a key evolution was recognising our strengths in patient-centred outcomes and real-world evidence and leaning into those. Focusing and excelling in our niche has made a huge difference in the impact we can deliver.

You’re a language enthusiast and an avid traveller. How have your experiences with different cultures and languages influenced the way you have built relationships as part of Vitaccess’s Real MG Registry? 

I could talk for days about language and travel! From my experiences, I’ve learned that while human nature follows similar rules everywhere, the ways people express and prioritise things culturally can vary hugely.

I used to work as a Project Manager, and once had a project spanning over 100 languages, some of which I hadn’t even heard of before. There was one, Runyankole, a Bantu language where I learned through a linguistic validation process that the words for ‘life’ and ‘health’ were essentially the same: life is “amagara” and health is expressed as “amagara marungi” (literally “good life”). The lead linguist remarked, “If you have good health, you have a good life,” and I could only agree!

That lesson has stuck with me and directly shapes how we engage with patients in the Vitaccess Real MG Registry. Understanding cultural nuances and adapting communication accordingly has been crucial to building trust, encouraging participation, and making sure patients feel truly heard. It’s this attention to language, context, and human experience that helps our registry capture accurate, meaningful insights while respecting the diverse backgrounds of the people we work with.

Your role involves shaping partnerships and commercial strategy. How do you make sure that patient needs and perspectives stay central in commercial conversations and decisions? 

I make it clear from the very first conversation: this is how we work. Bringing the patient voice in from the start isn’t just a philosophy, it’s fundamental to everything we do. Patient perspectives are intrinsic to patient-centred outcomes research, so why wouldn’t they remain central to any study? After all, patients are the experts in how they feel, and outcomes research should reflect that.

My brother works in the video game industry and finds it unbelievable that not involving what they would call ‘end-users’ throughout a product development cycle is even possible. And really, in any other industry, it would be almost laughable. So why should pharma be any different?

You’ve worked on multilingual, multi-country studies. What have you learned about capturing patient experiences consistently – but respectfully – across different cultures and health systems? 

One of the biggest lessons is that capturing patient experience isn’t just about asking the same question everywhere, it’s about making sure that question means the same thing to everyone.

Patient-reported outcome measures are a key way we measure patient experience, helping us understand how people feel and function in their daily lives. When you are using these questionnaires across multiple countries and languages, the consistency doesn’t come from direct translation, you really need to preserve the meaning.

So, this is where the magic happens and linguistic validation comes in.  It’s a rigorous process, typically involving at least 5–7 linguists per language per questionnaire, which includes multiple forward and backward translations, reconciliation, interview stages with anything from 5-10 respondents, and detailed reviews to ensure conceptual equivalence rather than literal translation.

For me, the most important part is speaking with people in their local language during cognitive interviews. You ask questions like:

• “In your own words, what is this asking?”

• “Does this wording feel natural?”

• “Are the examples culturally relevant?”

I’ve seen simple adaptations in language make a big difference. A question referencing “golf” as a light activity doesn’t land everywhere, so in the Nordics it was adapted to “foraging.” Similarly, “vacuuming” became “sweeping” in places where that’s more familiar. And down to the smallest details, like in some language scripts, underlining can make words harder to read or distort their meaning entirely, so bold formatting is often a better choice. These nuances can easily be overlooked, but they can significantly impact how a question is understood.

 It goes through multiple adjustments like these that ensure we’re capturing true patient experiences, not just literal translations so the data is meaningful, comparable, and, most importantly, respectful of the people behind it.

I’m looking forward to building on this work further next month at conferences hosted by the Myasthenia Gravis Foundation of America and the American Academy of Neurology. These events offer a valuable opportunity to connect with patients, clinicians, and researchers who are all working toward a shared goal: advancing our understanding of MG and improving outcomes. For me, one of the most rewarding aspects is meeting the people behind the research, hearing their perspectives, exchanging ideas, and exploring how we can continue to move the field forward together.

Thank you, Anna, for sharing your insights and for the passion you bring to every partnership and patient conversation.

Anna’s work exemplifies what happens when commercial strategy is guided by genuine respect for patient voices. Through her work on the Vitaccess Real MG Registry and partnerships with organisations such as the MGFA, she’s demonstrating that patient-centricity isn’t just a value statement, but a practical approach that makes research stronger, more meaningful, and more globally relevant.