Patient Voices Matter: Gisela Linthorst on Shaping the Future of Healthcare

Welcome to the latest edition of our Cognitant interview series where we discuss the hot topic of how to engage and empower people around their health, with experts in the field in healthcare. Today, I have the pleasure of introducing Gisela Linthorst, Head of Patient Engagement at Azafaros.

Gisela began her career as an oncology and haematology nurse at the Dutch Oncology Institute (NKI) for nearly 10 years, specialising in bone marrow transplants and clinical trial research. She then transitioned to rare diseases at Genzyme,?setting up homecare for patients with Enzyme Replacement Therapy for conditions like Pompe, Fabry, and Gaucher disease. As Patient Care Manager, she led projects to support patients and raise awareness of lysosomal diseases. In 2016, she joined Sanofi Genzyme Europe as Head of Patient Advocacy in Rare Diseases, expanding her role globally.

Now at Azafaros, Gisela brings over 20 years of pharmaceutical experience, prioritising genuine patient engagement. Her focus is on amplifying the patient’s voice and influence in clinical studies and treatment access. Welcome Gisela!

Gisela: Thank you for having me, Alex.

?Alex: To kick things off, Gisela, what does patient engagement mean to you?

Gisela: Patient engagement, to me, means integrating patients perspectives into every aspect of what we do. Whether it's developing a clinical trial or striving for a cure for rare diseases, it's about involving patients in every step of the process. What did/do they experience and what do they need? This includes connecting, listening, acting, and truly understanding their perspectives to inform drug development.?

Alex: Could you share some of your experiences with patient engagement?

Gisela: Certainly. My journey began as a nurse at the Dutch Oncology Institute (NKI) before transitioning to the pharmaceutical industry, where I worked for Genzyme, a rare disease company. There, I learned the importance of patient advocacy and engagement. From developing home care programs to translating patient experiences into drug development and market strategies, or for example developing understandable patient educational materials,?I've been deeply involved in empowering patient communities and learning from their disease journey and their challenges

?Alex: How do you believe patient engagement can support drug development goals?

Gisela: Patient engagement is pivotal at various stages. It's about understanding patient needs, not just for treatments but also for designing patient friendly clinical trials, quicker diagnoses, needed resources, and improved quality of life. By listening to patient perspectives, we can shape drug development strategies to better serve the community. Additionally, involving patients before and during discussions with regulators and payers ensures that their voices are heard throughout the process.?

Alex Merckx: So, in essence, patient engagement can improve health services?

Gisela: Absolutely. By developing treatments that truly benefit patients and involving them in decision-making processes, we ultimately enhance healthcare systems. Patient engagement isn't just about treatments; it's also about understanding the entire journey of living with a disease and determining what support or opportunities are requested (in addition to what is often provided) along the way.

?Alex: If you had a magic wand, what change would you make to how patient engagement is carried out by the industry?

Gisela: My wish would be for patient engagement to be fully integrated into the fabric of drug development or other company strategies. This means taking patients seriously, listening to their feedback, and fostering genuine, transparent interactions between patients, communities, ?pharmaceutical companies and regulators. It's about building an environment where mutual respect and open dialogue thrive, leading to better outcomes for all stakeholders.

?Alex: Thank you so much, Gisela, for sharing your insights on the importance of patient engagement in healthcare.

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