The patient's voice must be heard more clearly

Did you know that your wig, scarves, and hats are partially reimbursed by health insurance if you lose your hair as a result of cancer treatment? Or that you are entitled to reimbursement of your transportation costs to and from the hospital for your treatment, even if you use your own car? Or that your partner, with his fear of losing you to breast cancer, is entitled to a consultation with a psychologist? And that the latter also applies to your children? Healthcare providers are not always aware of existing support measures, and as a cancer patient, you often lack the energy to find out for yourself. Ask your health insurance fund about this.

Your voice should also be heard in the medical care process. Have you agreed to the proposed treatment? Were all options discussed? Do you feel sufficiently informed? Are you aware that you are entitled to a second opinion? Are you aware of any ongoing studies involving new drugs for which you may be eligible? Have you been informed about the existence of a patient association for your type of cancer and have you been made aware of the drop-in center in your neighborhood? A peer support group or patient association can support you in this, but is the information they provide up-to-date and scientifically sound?

Gaps in healthcare

There are many gaps in healthcare, which is good in itself, but also has room for improvement. In his book 'De stem van de patiënt' (The voice of the patient)*, author Stefan Gijssels exposes these pain points using numerous recognizable examples and testimonials. More importantly, he proposes solutions on how healthcare can be better tailored to the needs of the patient. This is something that not only benefits the patient, but also doctors and hospitals. In short, the entire healthcare system. An example: more than half of chronic patients do not take their medication correctly. The reasons for this are varied: they do not understand what the pills are for, they were not aware of unpleasant side effects, they do not trust the doctor, or they find the medication too expensive. With good communication, much can be improved here, but there is often no time for an in-depth conversation. However, a better understanding leads to greater involvement, better compliance, and fewer relapses. This can also reduce or delay treatment costs.

The 360° model

Gijssels, former CEO of Digestive Cancers Europe and co-founder of the Patient Expert Center, has developed a model to optimize care. It is his '360° model', which he divides into four quadrants, with healthcare providers and the system on the left, and the patient and surrounding associations on the right. The individual is at the top and the collective at the bottom. The basic premise is as follows: on the one hand, there are people who know how to treat the disease, the doctors, and on the other hand, there are people who know what it means to live with the disease, the patients. Both are useful and complement each other. Doctors can learn from patients and vice versa. The individual perspectives (doctor and patient) can be extended to a collective level. Here, the patient receives support from patient associations and organizations that monitor patient rights and represent their interests. For example, by campaigning and lobbying for the reimbursement of new breast cancer drugs. The collective perspective that supports healthcare providers focuses on science and policy. Scientific organizations develop guidelines and protocols that outline the best treatment for each clinical picture, so that doctors know what to do. Policy, in turn, can ensure that medical knowledge is pooled. Consider, for example, the measure whereby breast cancer surgery is only reimbursed if it takes place in a recognized breast clinic, because that is where you have the best chances of survival.

Building bridges

At the individual level, shared decision-making should bridge the gap between doctor and patient. Decision aids should be developed that allow doctors and patients to discuss treatment options and their respective advantages and disadvantages together. Patients should be able to make informed decisions about their treatment. At the collective level, a plan is needed for each disease. Just as there are defined care pathways for what to do in the case of diabetes, for example, every form of cancer should have a plan. Breast cancer is already on the right track thanks to the accredited breast clinics that have to meet well-defined criteria.

Patient experts

Patient associations need representatives: people who stand up for their patient group because they themselves have or have had the disease (or, in the case of Alzheimer's dementia, are close to a patient). These representatives must not only know what it means to experience the disease, but they must also be articulate, have some knowledge about the disease, its impact, and developments in innovation and healthcare organization. In short, they represent the voice of the patient for this or that disease: they are patient experts. To give people the opportunity to become patient experts, the Patient Expert Center (PEC) was founded on the initiative of Stefan Gijssels. Patient associations can become members of PEC and have individuals follow the training to become patient experts. Trained patient experts can improve their patient association so that their voice is heard when it comes to their disease. In this way, they can finally take on the role that has been assigned to them: being at the center of healthcare and improving it from within. It is a plan with many concrete action points that could greatly improve care for chronic patients, including women and men with breast cancer.

*The voice of the patient, levers for future-oriented healthcare. Stefan Gijssels, 2025 LannooCampus. ISBN 978 90 209 1549 5

More information about the patient expert center: https://patientexpertcenter.be/

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