Amplifying the Patient Voice in Belgium


Belgian healthcare performs strongly across most metrics and international comparisons, but – as elsewhere – there remains room for improvement in terms of integrating patient feedback and experience into the care cycle.


Patients are often left to navigate these challenges on their own, without a system in place to guide them through their journey and address their holistic needs, including relationships, employment, nutrition, and physical activity

Stefan Gijssels, former VP communication and public affairs, Janssen EMEA


Room for Improvement

This became apparent to Stefan Gijssels – a 20-year pharma veteran whose last position in industry was as VP Communication and Public Affairs for Janssen’s EMEA operations – during his own personal experience of cancer. Despite his long-term connection to healthcare, Gijssels “was surprised to see that certain aspects of care were completely overlooked, regardless of the overall outcome. Despite receiving treatment at one of the top cancer hospitals in Europe with excellent survival statistics, I personally encountered several areas where things could have been significantly improved, such as diagnosis, patient information on nutrition, on physical exercise, on access to reimbursement and social services, and on the availability of supportive care.”

He laments, “Patients are often left to navigate these challenges on their own, without a system in place to guide them through their journey and address their holistic needs, including relationships, employment, nutrition, and physical activity.”

For Eva Schroeters, director of RaDiOrg – Belgium’s main rare diseases association – this is a scenario keenly felt by rare disease patients. “We have been repeating over and over again the need for our patients to have quick and correct diagnosis, so shortening this diagnosis period is essential. This can be achieved, for example, through organised neonatal screening programs.”

She adds, “Secondly, we have some patients with the correct diagnosis but without the expert care that they require. Sometimes this is not available due to the small size of Belgium, but even when we have the dedicated experts here, patients are sometimes not being referred to them. We also see that there is inequality in the quality of healthcare for certain complex rare diseases. For some there is a multidisciplinary approach where post diagnosis they interact straight away with a centre and a whole program is set up with dietary, psychological and social support. The majority of rare diseases that are equally as complex do not have these structures available, and so we have been advocating to have integrated care for all conditions.”

Belgium’s Patient Expert Center – where Gijssels now serves as chairman – aims to address some of these issues by training patients to become experts in their own disease area. The organisation hopes that its six-month training course for patients – covering everything from the healthcare system to patient rights, psychology, legal responsibilities, disease knowledge, treatment options, research updates, living with the disease, social services, nutrition, physical aspects, and mental well-being – allows them to be better advocates for their illness in front of authorities as well as consulting and guiding individual patients and their families.


Data is Key

An important part of our advocacy at the Belgian Diabetes Forum (BDF) is the need for better data to understand the true impact of diabetes in Belgium

Dr Frank Nobels, president

Patient association stakeholders are broadly aligned in identifying data as a key factor in improving Belgian patients’ treatment experiences and outcomes.

“An important part of our advocacy at the Belgian Diabetes Forum (BDF) [a multi-stakeholder initiative focused on driving better diabetes policy, prevention, and care – Ed.] is the need for better data to understand the true impact of diabetes in Belgium,” says the organisation’s president, Dr Frank Nobels.

To this end, the Belgian government’s move to institute a Health Data Agency is music to Nobels’ ears. “Belgian healthcare is strong in many aspects, but we lack vast and accurate data,” he states. “We have health records with diagnoses at the level of physicians, and we know the nomenclature of all treatments (without diagnoses) at the social security level, but we do not have a system that links the two. Having advocated for the establishment of a Health Data Agency of the kind that already exists in Denmark and Sweden, we were happy to see the recent announcement that such an agency is finally being created.”

However, determining which data should be collected and analysed will be a challenge, according to Frederic Clais of Eli Lilly, an active participant in the BDF. “Digitalization and data registration are key areas of focus for the forum,” he opines. “While connected care is important for individual patients and healthcare providers, broader data collection efforts and the creation of worldwide evidence should also be considered.”

“It is important to gather data from the patients and have a well-structured database,” agrees Stefan Joris, director of the Belgian Cystic Fibrosis Association (BCFA). “Sweden has a good system in place in which the patient associations and healthcare professionals work together and there is an application for patients to use. We should look towards a similar model in Belgium, informing the patients that we are collecting and storing data and where we are using it. Giving them this information builds trust throughout the healthcare network.”

Gijssels adds that “the current healthcare system tends to overlook the bigger picture and lacks a holistic mindset. There is often a lack of attention to the broader patient journey which leads to inefficiencies and wasted resources within the system. A systematic approach is needed to capture and analyse patient data, with the aim of improving the overall patient experience and achieving better health outcomes at lower costs. Currently, much of the valuable information about what patients go through remains hidden and underutilized.”

Collecting and utilising patients’ personal data is, however, no easy task, as Joris explains. “We have built a database that looks at quality of life through a new questionnaire, PRO-CF, that was developed at the European level. We are building a validation study for this system as well as a paediatric version. Furthermore, we are looking to collect data from medical professionals and store it. I would say we have underestimated the importance of patient trust as they have fears about the government having certain information and many are not ready to have their confidential information in the hands of someone they do not know.”


Finding Funding

A similarly significant area is financial support, whether from public or private sector organisations, for the work of patient associations. This is especially important given these organisations’ concerns about being perceived as in the pocket of the pharmaceutical industry.

“Ideally, government strategies and patient organisations should work together in a collaborative and coordinated manner,” begins Gijssels. “The government can provide support and funding to patient organisations to carry out their important work. This is the case in the Netherlands and Belgium ought to follow suit. In fact, from 2024 the Netherlands will double its subsidies to patient groups to reach EUR 46 million. I hope that the Belgium government can come to realize the opportunity to work together and give proper support for the value groups like the Patient Expert Center can bring.”

He adds, “the relationship between the industry and patient organisations is indeed an area for concern for the [Belgian] government, but they should increase their own financial support towards patient organisations if they have concerns about industry funding. The existence of patient organisations highlights the gaps and flaws in the healthcare system. If the healthcare system was truly effective in accompanying, supporting, and guiding patients, the need for patient organisations would be minimal… The paid interactions we have with industry are all based on generating better understanding and outcomes, but without any conflicts of interest and in full compliance with all legislation.”

Isabelle de Walsche, managing director Benelux for European women’s health-focused mid-cap Gedeon Richter addends, “I agree with the regulation that companies should not have direct contact with patients, but unfortunately for some smaller diseases, there are no patient associations, so there is no one to defend the patient. So, I think we must be aware of that, and try to gain some perspective of their needs and sorrows.”

The BDF’s Nobels highlights the importance of bringing together a host of different stakeholders to drive positive change. “Private companies are also members of the Forum, and we have a relationship with many different firms, so we are not influenced by just one voice,” he begins. “We all have common goals; that is to have better data, screening to diagnose undiscovered patients, early treatment with the correct medication, good follow-up, etc. These goals are mutual with the patient. When we discuss with the government, we let them know we are working also with the industry. We are very transparent in our relationship, and we find the equilibrium between being supported by the private sector and maintaining a strong neutral voice.”


A Stronger Voice in Regulatory Decisions: The Patient Council

One positive step forward in terms of the relationship between the Belgian government and patient associations is the creation of a patient council within NIHDI’s 52-point ‘new medicines roadmap’, aimed at reforming the country’s access to innovation scenario. At a continental level, the European Medicines Agency (EMA) and patients have been actively interacting since the creation of the Agency in 1995, with the Agency now engaging in “systematic patient input along the medicine lifecycle.”

The BCFA’s Joris feels that Belgium’s new patient council is “a major step forward.” He adds that “In the past, our voice was only heard in the process if we were invited by the pharmaceutical company, which was not an option as we did not want to be perceived as defending their interests. We have been trying to explain that there are three parties that need to be included in any reimbursement decision: the payer, the pharmaceutical company, and the patient.”

“Another point is that if the government stakeholders making the decision do not have the expertise on the disease, they should go and seek it. Patients are the true experts as the only actors that know what living with a condition is like and the impact of a treatment on how they feel. Doctors are seeing this now and are asking for patients’ opinions, and so should the reimbursement body. Therefore, this move to include the patient voice is a welcome one if it happens, but we are not there yet.”

Gijssels adds, that “government strategies, like the patient council, play a crucial role in setting the overall direction and framework for healthcare policies and initiatives. They have the power to shape the healthcare landscape, allocate resources, and implement systemic changes. The Patient Council, specifically, can serve as a platform for representing patient perspectives and ensuring that their voices are heard in policy discussions and decision-making processes. It can provide a formal mechanism for patients to engage with policymakers, share their experiences, and contribute to the development of patient-centred policies.”


A Collaborative Approach

In the past doctors were a priority, but for the last several years we have worked to integrate the voice of the patient at every stage of the medicine’s life cycle

Pierre Boyer, general manager, Servier BeLux

For an industry that constantly trumpets its impact on patients, pharma has historically been a little slow to incorporate patient insights into the drug development process, especially at its earliest stages. However, given Belgium’s role as an R&D and clinical trials hub, some of the companies implanted in the country are today keen to highlight how they are working to better integrate patient input in their operations.

“In the past doctors were a priority, but for the last several years we have worked to integrate the voice of the patient at every stage of the medicine’s life cycle,” says Pierre Boyer, general manager of Servier BeLux. “We value their opinion and contribution as we believe their knowledge of their illness and treatment is essential to further research and innovation. In oncology, there is an emotional shock when these diseases are diagnosed and afterwards, they become a part of a patient’s life. Therefore, it is important not only to improve treatment but to improve the ecosystem around the patient.”

He continues, “We did a lot of research on patients suffering from cancer in Belgium and are offering several services to deal with the psychological aspects of the disease. For example, we have a specific educational programme LEA “Listen, Explain and Act” in oncology, developed in collaboration with a patients’ association, for patients, families, and healthcare practitioners. We have also a lot of programmes for patients in the cardiovascular disease area and in diabetology about prevention and adherence to treatment.”

For Roche, this bolstering of patient input has dovetailed with the company’s extensive clinical trial operations in Belgium, as the company’s Belux General Manager Marie-José Borst explains. “Patients are central to our discussions and decisions. We work closely with various patient organisations and have co-created several excellent initiatives with them. Patients and patient representatives can express what is most important to them, which we can then incorporate in our operations. In clinical trials, for example, we bring in patient input on both a local and global level to adapt the amount of information given to trial participants.”

She goes on, “Additionally, in 2020 Roche Belgium established the Belux Experience Exchange for Patient Organisations (BEEPO), a learning and networking program that brings together Belgian and Luxembourg patient organisations to exchange experiences, knowledge, and best practices. This is a local counterpart to the international IEEPO network. BEEPO discussions are ongoing, and our annual meetings are a great source of patient insight into how we can do things differently.

“One BEEPO discussion centred around the need for easily accessible information on clinical trials. This became the starting point of a larger initiative led by Patient Centrics to co-develop clinical, a clinical trial portal for Belgium that is already partly live ahead of a full launch in May 2023. Many patient organisations are planning to integrate the tool into their own websites, which lists the 260,000 clinical trials in Belgium by therapeutic area and patient profile. This will be a huge benefit for patients, for Roche, and for the wider ecosystem.”

Related Content

Latest Report