How to integrate patient perspectives in innovation

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After recovering from metastatic colon cancer, Stefan Gijssels became a patient advocate dedicated to improving the healthcare system that saved his life. As Chair of the Belgian Patient Expert Center (PEC), he has helped to establish a training program turning patients into patient experts who can provide stakeholders like hospitals and companies with valuable insights during the innovation process.

Q: Can you tell me a bit about your background and what led you into patient advocacy?

Stefan Gijssels: “I have a background in public affairs: I started working for Janssen Pharmaceutica in 2001, first as Vice President of Government Affairs for Belgium, and later as Vice President of Public Affairs & Communication at the EMEA level. Then in 2015, I was diagnosed with metastatic colorectal cancer. I was operated on several times and underwent chemotherapy for six months. I was treated in one of the best hospitals for colorectal cancer, and I’m very lucky to be alive. But at the same time, the experience made me realize that there is also a lot of room for improvement in our healthcare system.

“How many lives and how much money could be saved if our system was a bit more patient-centric?” – Stefan Gijssels

“I think the biggest problem with our healthcare system is that it’s poorly organized. In Belgium, we have a fantastic medical system in terms of ‘hard science’ – clinical aspects like surgery and different therapies, technology like robotics and AI, as well as excellent infrastructure. But patients also need to receive guidance and support for the more human aspects of care as well, including access to information and social services. Unfortunately, despite our focus on new technologies, the full potentials of these innovations aren’t being realized because of the way the system is set up. Patients aren’t involved enough in the creation and implementation of these solutions, or they lack the knowledge to access them. It makes you wonder: how many lives and how much money could be saved if our system was a bit more patient-centric?

“With all this in mind, once I was declared free of cancer, I resigned from my position at Janssen and started dedicating my time to health policy consultancy and pro bono patient advocacy. I’m now Chair of the Belgian Patient Expert Center (PEC), trying to improve patient involvement in innovation and make sure that we optimize care for everyone.”

Q: How does direct patient involvement help to improve innovation?

Stefan Gijssels: “It’s really a matter of perspective. Medical professionals, researchers, and academics – they have their own valuable point of view. But you only get a wealth of good ideas if you have multiple different perspectives when tackling a challenge. Although the patient perspective often isn’t scientific, it provides valuable insights into the actual practicality of an innovation for the end user. Patients are more likely to ask simple questions like: ‘Does this improve my day-to-day life? Can it be made simpler? Is it user-friendly?’.

“As a perfect example, there was a new technology for children with epilepsy launched a few years ago by the Belgian startup called Epihunter. The solution was developed by Tim Buckinx, a Flemish father whose son Daan would regularly experience epileptic ‘absence’ seizures in class. Tim’s son was frustrated as his seizures got him in trouble with the teacher, who thought he was just daydreaming or not paying attention to the lesson. In response, Tim developed an EEG headband that could connect to an app on his son’s smartphone on the desk, turning on the phone’s flashlight when his son was having a silent seizure. This technology won’t cure Daan’s epilepsy, but it is helping to improve his social interactions and his quality of life ­– a perfect example of how a patient (or their loved one) can help come up with creative solutions to everyday problems.”

Q: Is it important to have patients involved in innovation right from the start?

Stefan Gijssels: “Absolutely, even before R&D begins. At the Patient Expert Center, we had a project last year where patients helped to assess a new digital patient leaflet. It’s an app that allows the patient to scan the QR code on a box of medicines to go to a website where they can access a digital leaflet instead of having to read the patient leaflet on paper. This gives them options to, for example, increase the font size or use a search engine to look up specific terms or contraindications. We had strong patient involvement in the project and passed their feedback on to the technology developers, who were amazed at how many ideas had been generated by the patients – not only in terms of user-friendliness but also potential new ways to use the technology and to expand upon it. It was really an eye opener for the developers, who said: ‘We were so many people in the room, and yet we missed so much. We wish we’d gotten the patients involved earlier in the process’.

“Many things that would actually be really helpful for patients remain undeveloped – simple solutions that aren’t explored simply because the researchers aren’t aware of the unmet need.” – Stefan Gijssels

“Currently our approach in the industry is like this – very bottom-up, with individual academic groups or companies themselves determining which ideas might be interesting to pursue. The patients are typically only consulted at the tail end of the developmental process when a prototype needs testing. As a result, many things that would actually be really helpful for patients remain undeveloped – simple solutions that aren’t explored simply because the researchers aren’t aware of the unmet need. I’m a very strong advocate for research prioritization – assessing research priorities together with the patient community. We could save a lot of time, energy, and money by involving patients from the very start of the innovation process.”

Q: How can we improve the integration of patient perspectives?

Stefan Gijssels: “That’s the big challenge we’re currently working on at the Patient Expert Center. We want patient involvement to be systematic, and part of the innovation process from start to finish. So we’ve developed a course where we train patients to become patient experts. It’s a six-month program, two hours a week, starting with generic information on the healthcare system, clinical trials, patient rights, etc., with the second half focused on the patient’s specific disease area. At the end of the course, the patient receives a certificate, and we work together with hospitals, academia, and industry to see where best we can integrate these patients’ perspectives.

“We initiated the program two years ago, and we have already built up a pool of over one hundred patient experts across ten different disease areas. Many of them have already become members of advisory boards in pharmaceutical companies, hospitals, and government agencies. The program gives them the opportunity to represent their patient group to professional stakeholders, helping to improve the development of new solutions and technologies for themselves and others. Meanwhile, the hospitals, companies, and other stakeholders are benefitting from earlier patient involvement, and working together with patients specifically trained for this purpose. There is clearly an appetite for this approach among both patient sand professional stakeholders. We’re also receiving inquiries from people in The Netherlands, France, and Luxembourg who want to set up similar models there. The program is unique, and an important step towards more patient-centric innovation in Belgium.”

Q: What is your hope for the future?

Stefan Gijssels: “My aim is to improve both innovation and the healthcare system itself through better integration of patient insights. I find that mind boggling that we spend 50 billion euros every year on healthcare in Belgium. It’s an enormous amount of money, and yet we know that there are a lot of gaps where money is being wasted. And far worse than that: this suboptimal system is also costing lives. It seems ridiculous that we’re not improving the system in a smarter and more deliberate manner, using all of the resources at our disposal, including patient insights. So that’s what I hope for the future: iterative improvements to the healthcare system, informed by patient perspectives.”