Best Practices
These case studies show how we operationalize the patient-directed approach throughout our work.
Case Study: TGCT & Me
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Through engagement with people living with tenosynovial giant cell tumor (TGCT), TGCT Support (a patient advocacy program operating under the Life Raft Group), and healthcare professionals, we learned that the burden of TGCT is multifaceted. People living with TGCT shared that they need physical, psychological, and social support, yet few resources address all these dimensions together.
Act
Based on these needs, we collaborated with people living with TGCT and TGCT Support on the TGCT & Me app. Community input shaped the app’s content and features at every step. The app also includes a special section sharing real-life experiences - diagnosis stories, practical tips, and daily coping strategies - developed directly from engaging with the community. The app is designed to grow continuously with ongoing input from patients living with TGCT, ensuring it remains relevant and responsive to patients’ evolving needs.
Impact
The app delivers a comprehensive, user-informed resource that uniquely combines physical exercise, symptom tracking, and TGCT education in one accessible platform. By directly involving people living with TGCT, the app empowers the community with tailored tools designed by them. The videos featuring people living with TGCT provide authentic, personal perspectives within the app.
You can download the TGCT & Me app via Apple or Google Play app stores
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TGCT & Me Case Study
Case Study: Patient Voice
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We have heard from patients through multiple channels that medical information often feels distant and difficult to follow. Even materials designed for patients can be filled with unfamiliar terms or language that does not reflect how they actually talk about their symptoms and experiences.
Act
Working closely with patients, EMD Serono co-created lexicons that capture the words, phrases, and nuances they naturally use. These insights were embedded into the Patient Voice App, a generative AI platform that reviews scientific content, identifies complex or unclear language, and transforms it into plain language summaries. Because the system is guided by patient-validated terminology, the outputs feel more natural, consistent, and easier to understand.
Impact
By grounding Al in real patient language, Patient Voice App helps make complex information clearer and more relatable. Patients and caregivers can better understand research and treatment information, while healthcare teams benefit from a scalable way to create materials that truly resonate.
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Patient Voice Case Study
Case Study: MyoSense360™
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People living with Generalized Myasthenia Gravis told us that one of the greatest challenges of the condition is its unpredictability. Symptoms and their overall condition may vary within hours, from day to day or over longer periods. Many shared that current ways of assessing the disease, which rely on periodic check-ins, do not fully reflect these changes or how they are truly feeling. This can make it difficult to know what's "normal" for them, notice when their condition may be getting worse, require medical attention, or explain their experience clearly to their healthcare team.
Act
In response, EMD Serono, together with Ad Scientiam*, launched a multi-country, multi-year program called MyoSense360™. This program, still in the investigation phase, aims to use data from wearable devices, simple app-based tests, and short questionnaires to capture how patients are doing in their everyday lives, over time. With patients' full consent, information collected passively through wearables, such as step count or heart rate, will be combined with input directly from patients. The goal is to build a fuller, more continuous picture of how the condition evolves, rather than relying on occasional snapshots.
Impact
MyoSense360™ intends to help turn experiences into trackable insights. Patients gain a clearer understanding of their condition over time, while healthcare professionals can see patterns they might otherwise miss, aiming to support earlier intervention and more personalized care, grounded in everyday experiences.
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MyoSense360™ Case Study
* Ad Scientiam is a French digital health company based in Paris, France (21-23 rue Albert Bayet, 75013 Paris), specializing in the development and clinical violation of digital biomarkers and digital health solutions. Ad Scientiam is the developer of MyoSense360TM, a software-as-a-service medical device currently under clinical investigation for people living with autoimmune myasthenia gravis. The MyoSense360 trademark is registered in France, with trademark registration for Europe and the US currently in process.
US-NONHC-00001, 10/2026