World Premiere: Patients Take the Lead with the First-Ever Patient Platform for Clinical Research

While one in four Belgians lives with a chronic condition or disease, and 19,000 clinical studies are currently underway in Europe — including 1,700 in Belgium — as many as 80% of these studies start late because researchers cannot find the right patients. Meanwhile, 64% of Belgians say they are willing to participate in clinical research, but do not know how to do so. Today, the Patient Expert Center and Curewiki are launching the very first platform that directly connects patients and clinical research (including clinical studies, panels, and surveys).

Brussels, October 15, 2025 — A world first launched in Belgium: From now on, patients have an innovative way to contribute to the future of healthcare. The Patient Voice Database, a collaboration between the Patient Expert Center and Belgian healthtech start-up Curewiki, offers patients a safe and accessible way to connect with clinical research, share their experiences, and contribute to medical innovation. The platform acts as a digital bridge between patients and clinical research by translating complex study criteria into clear, patient-centered journeys.

This initiative upends the conventional research model. Whereas researchers traditionally had to look for patients for their studies, this new AI-powered platform now puts patients in the driver’s seat. Patients can decide for themselves which research projects they want to participate in and thus take an active role in shaping the future of healthcare.

This launch responds to the call of patient organizations and aligns with the World Health Organization’s (WHO) recommendation to involve patients more deeply in innovation and research. According to the WHO, patients should no longer simply participate but also take the lead and help guide healthcare and science.

“We are bringing research closer to the realities of patients’ lives and directly contributing to the development of new treatments. We have inverted the paradigm: researchers no longer have to find patients — it is patients who find their way to research,” says Stefan Gijssels, President of the Patient Expert Center. “This establishes a new standard: moving from a top-down to a bottom-up approach. Clinical research is essential for the development of innovative medical therapies and can also offer participating patients early access to promising treatments.”

Clinical trials represent the final stage in the development of a medicine or treatment, during which patients participate in research to scientifically evaluate whether a medical strategy or therapy is safe and effective in humans. This process helps researchers find better treatments for others in the future and brings renewed hope to many people.

Belgium as the pilot country

Belgium serves as the pilot country for this global initiative. The ambition is to roll out the model across Europe, in collaboration with patient associations and international academic institutions.

For the first time in history, the voice of patients can be heard systematically, across all diseases, while patient organizations gain a powerful tool to make that voice truly count.

“Today, more than 16,000 Belgian patients are already registered on the platform, which is free, secure, and fully GDPR-compliant,” explains Jean-Sébastien Gosuin, founder of the Belgian healthtech start-up Curewiki and formerly the driving force behind QVax, the vaccination waiting list during the COVID-19 campaign. “With the help of artificial intelligence, we ask patients simple questions in order to match them with ongoing research. Our goal is to keep developing the platform together with patient organizations and hospitals and to significantly increase the number of registered patients by the end of the year.”

How it works

Patients answer a few short questions about their health, after which they receive personalized suggestions based on their answers. These suggestions include only studies or projects that are relevant to the patient and for which they are eligible. Patients decide for themselves — after discussing with their doctor or specialist — whether they are interested in participating. Their profile is only shared with explicit consent. There is no obligation: registration is voluntary, free of charge, and data can be deleted at any time.

Benefits for all stakeholders

This creates a win-win situation: Patients can discover innovative treatments and share their experiences. Patient organizations gain access to anonymized data to strengthen research, support, and better inform their members. Researchers and hospitals can find suitable and motivated participants faster, increasing the efficiency and representativeness of clinical research.

“As the umbrella organization for the innovative pharmaceutical industry in Belgium, pharma.be is delighted to support this initiative, which strengthens patient involvement in clinical research. By giving patients an active role, we can not only maintain Belgium’s leadership in innovation but also enhance collaboration between industry, patient organizations, and research partners. Together, we ensure that research becomes more relevant, effective, and patient-centered,” says Caroline Ven, CEO of pharma.be.

“Patients and caregivers can easily register via alzheimerliga.be/laat-je-stem-horen and indicate which studies or surveys they wish to take part in. Thanks to this platform, they don’t have to re-enter the same information for each new study, saving valuable time for participants, clinicians, and researchers. Alzheimer Liga Vlaanderen is pleased to help build this innovative bridge between researchers and patient experts, with the goal of continuously improving care,” says Piet Desmet, Communications Officer at the Alzheimer Liga.

“By gathering thousands of patient voices, the platform strengthens the link between patients’ real needs and healthcare innovations, better aligning medical policies with the people they serve,” concludes Jean-Sébastien Gosuin, founder of Curewiki. “It is an ecosystem for all healthcare stakeholders and will ultimately provide opportunities for public policy, prevention, and data analysis — always with respect for privacy and independence.”

Stefan Gijssels: “This is not just technology — it’s a movement. Patients want a better, higher-quality life for themselves and their loved ones. The Patient Voice Database empowers them to influence decisions and developments in the areas that matter most to them.”

Patients can register now via: https://www.thepatientvoicedatabase.org/fr to discover which research projects they can contribute to.

Read the official press release in French here.

This English version was translated from the original French release using AI.

Press contact:
Vincent Morrens — Head of Media Relations, WMH Project
+32 475 93 25 16
[email protected]