Stefan Gijssels, CEO of Patient Expert Center: "Patient experts are a win-win for companies"

From reviewing patient-focused brochures and speaking as an expert by experience at a conference to providing input on potential outcomes in clinical trials… in countless situations, the patient’s voice is a crucial addition. But where do you find a patient who not only experiences or has experienced the disease firsthand, understands how the healthcare system in Belgium works, and at the same time has a good grasp of his or her condition in general?

To give meaning

There are many empowered, motivated patients who want to make a difference for their peers and improve care for their condition. To give these people the best possible opportunity to do so, a number of patient organizations, led by Stefan Gijssels—himself a colorectal cancer survivor—founded the Patient Expert Center five years ago. Stefan comes from the pharmaceutical industry and understands better than anyone the need many pharmaceutical companies have to involve patients. It’s not just pharma; medtech companies, government agencies, hospitals, insurers, and research centers also need solid patient expertise. “We can’t keep up with the demand, especially in cancer care,” says Stefan Gijssels, CEO of the Patient Expert Center. “To represent that voice as effectively as possible, such a patient must not only be articulate but also understand how the healthcare system is organized, what the disease entails exactly, where the needs lie, what new treatments are in the pipeline, and so on.” The Patient Expert Center offers patients the opportunity to gain sufficient knowledge about their condition through a one-year training program to participate in these projects. “The training program includes a general component and a disease-specific component; all classes are held online on a fixed evening each week. Candidates must also meet a number of criteria themselves.”

The Patient Expert Center has set up an entire system to organize these training sessions and draws on experts in every field. Yet the patient pays virtually nothing. Stefan Gijssels: “That’s right. Our patient experts are volunteers who want to help their fellow patients. They want to do their part to improve care for their condition. They don’t have to pay. We do, however, pay our instructors a modest fee. That’s why we rely on sponsors for the Patient Expert Center.” The Patient Expert Center’s website features a striking number of pharmaceutical companies that are very supportive of this initiative and are eager to sponsor it. “The pharmaceutical industry certainly needs patient experts,” Gijssels agrees, “There are several possible models. A company can make a donation of 10,000 euros per year and work on a project basis. We are convinced that all other partners will also step up financially. After all, we create value for all parties.” Examples of projects include testing the acceptance of a digital patient information leaflet, information brochures, providing feedback on research initiatives, or setting up a buddy system for patients. The high demand for patient experts proves that there is a need for well-informed patients. “This year, we started with 140 new candidates covering a wide range of conditions,” concludes Stefan Gijssels. Next year, dozens of women and men with breast cancer will join them.

Interested?

Visit https://patientexpertcenter.be/ or send an email to info@patientexpertcenter.be for more information.

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