How digital innovation, artificial intelligence and meaningful patient involvement can help improve care
By Daniel Kraus | Rare & Chronic Voices
Read the German version of this article.
How do people move from their first symptoms to the right diagnosis, an appropriate treatment and, ultimately, care that also takes their everyday lives into account? This was the central question at the Patient Council 2026: how can patient pathways be reimagined to become more digital, better connected and, above all, more human?
What is a patient pathway?
A patient pathway involves far more than a series of medical appointments. It often begins with early, non-specific symptoms and continues through diagnostic tests, specialist consultations and treatment to long-term support. Rehabilitation, psychosocial assistance, peer support and managing an illness in everyday life are also part of this journey. For people living with rare or chronic conditions, this pathway can be long, confusing and marked by many gaps.
The Patient Council agenda therefore placed people firmly at the centre. In his presentation, Professor David Matusiewicz of FOM University of Applied Sciences in Essen explored how patient pathways could change in the medicine of the future. The key question is not simply which technologies are available, but whether they genuinely help people find their way through the healthcare system, reduce waiting times and improve coordination between everyone involved.
Digital innovation: opportunity and responsibility
Digital tools can bring information together more quickly, make transitions between medical practices, hospitals and other services smoother, and enable patients to take a more active role in decisions about their care. This creates a significant opportunity: care can become more continuous and personalised when relevant information reaches the right people at the right time.
At the same time, digitalisation must never become an end in itself. Good solutions need to be understandable, accessible and secure. They should complement personal conversations rather than replace them. It is especially important that nobody is excluded because they lack technical knowledge, suitable devices or reliable access.
AI and early detection
A dedicated presentation by Dr Justus Wolff of HuCa GmbH examined how artificial intelligence could transform early detection, using type 1 diabetes as an example. The topic highlights the potential of analysing complex data: warning signs might be identified earlier, allowing further diagnostic steps to be initiated in a more targeted way.
For patients, transparency is essential. It must remain clear how recommendations are produced, who is responsible for them and how sensitive health data is protected. AI can support healthcare professionals, but the individual circumstances and voice of the person must never disappear behind a technical result.
“Progress does not begin with technology. It begins with the question: what will this actually improve in the everyday lives of patients?”
Patient involvement must not begin at the end
Another session focused on moving from feedback to genuine change. Alexandra Czarnecki, Nicole Scheumann and Jessica Werchan of Sanofi referred to the Promise Report 2025 and the inclusion of patient perspectives in research and development. This raised an important question: how can the experiences of patients shape projects at an early stage instead of being requested only after development has already been completed?
During the World Café workshop that followed, participants explored together how digitalisation and innovation could transform patient pathways. Formats like this are especially valuable when dialogue results in clear feedback, measurable next steps and lasting cooperation. Patients and family members contribute knowledge that no clinical measurement can fully capture: lived experience of symptoms, burdens, treatment routines and the obstacles encountered in daily life.
Political conditions also shape care
To conclude the programme, Dr Sven Prietzel of the German Association of Research-Based Pharmaceutical Companies in Berlin considered how political reforms in 2026 could change patient pathways. After all, these pathways are not shaped solely in consultation rooms or research laboratories. Legislation, funding, data infrastructure and access to new therapies all help determine whether innovation ultimately reaches people in their everyday lives.
My personal conclusion
As someone living with Fabry disease and as the founder of Rare & Chronic Voices, I know from personal experience how important clear information, early guidance and meaningful involvement are. Many people affected by rare diseases face a long search for answers. Digital tools can help connect knowledge more effectively, but genuine improvement only happens when professional expertise and lived experience are treated as equally valuable.
The Patient Council 2026 addressed precisely this intersection by bringing together medicine, technology, research, policy and the patient perspective. For me, the most important message is that modern care must not simply become faster or more digital. It must become easier to understand, more accessible and closer to the people it is intended to serve. Achieving that requires continuous dialogue and the courage to include patients’ experiences from the very beginning.
Content basis: the agenda “Patient Pathways in Transition – Digital Innovation for Better Care”, Sanofi Patient Council 2026. This article provides an interpretive summary of the announced topics and does not constitute medical advice.