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You’ve gone from academic research in neuroscience and immunology into real-world evidence and medical writing. What drew you to this career path, and what keeps you excited about the work you do at Vitaccess?
I’ve always loved writing, so moving into medical writing was a natural transition for me from basic sciences. My role at Vitaccess morphed quite organically to focus on management and delivery of our patient-centered real-world studies, with writing still playing an important role, and I get a lot of satisfaction from coordinating the many moving parts required to execute a study successfully. Our work is constantly evolving and innovative, so it’s hard not to be excited.
You’ve worked extensively on myasthenia gravis studies and on communicating complex findings to different audiences. What have you learned about telling patient-centred stories from your MG work?
How big an impact do you hope the Vitaccess Real MG registry will have?
I am incredibly proud of the Vitaccess Real MG Registry and to be a part of the team that has built this project from the ground up. I’ve been lucky enough to be involved in every aspect of the registry – not only in its management, but development of the digital data capture platform, speaking directly with patient participants, building and engaging with the Scientific Advisory Board of eminent clinicians and patient experts, and initiating a partnership with the Myasthenia Gravis Foundation of America, the largest patient advocacy organisation in MG in the United States.
A key part of my job is to work closely with stakeholders at every level to ensure that the experiences of people living with the condition are communicated clearly and effectively, right to the point of evidence generation.
Ultimately, our mission is to improve patient outcomes and care with robust real-world data.
Outside of work, you’re deeply involved in the visual arts. How does your creative work; sketching, printmaking, weaving, influence the way you think about research, writing, and collaborating with clients and colleagues?
There can be a fair bit of project management that goes into creating a piece of art. Understanding the message you want to convey, deciding on the best materials to use, testing ideas and mapping out a final product – there’s many parallels with study design and development. There’s a need to be adaptable with art; you can spend hours working on something that ends up looking totally different to the image in your mind, and being able to move forward with what you have in some shape or form is a skill that certainly helps in the research space, where unexpected obstacles appear on a regular basis. Executing research is also a creative endeavour, so I definitely get to flex those muscles inside as well as outside of work.
Thank you, Fatemeh, for taking part, and for everything you do behind the scenes to bring studies like this to life.
Fatemeh’s work on myasthenia gravis is a perfect reflection of what Vitaccess is all about: connecting robust science with real patient experiences. Through the Vitaccess Real MG Registry, she’s helping to build a richer, more complete picture of life with MG by bringing together patient-reported insights and clinical data over time. By capturing those stories over time, the registry is building something far more powerful than a dataset; it’s creating a platform where patients actively shape the future of research and care.
In many ways, that feels very Fatemeh: thoughtful, collaborative, and ambitious in all the right ways.
Fatemeh Amini
