Thursday, November 6, 2025
How do you ensure that a broad group of patients remains engaged in your research over the long term, even when they experience significant illness or health challenges?
In the Medical Delta program “Appropriate Remote COPD Care (PASTEL)”, research and implementation of e-health innovations go hand in hand. The program’s ambitious goals require a great deal of flexibility from the consortium partners, but certainly also from the research group itself: the healthcare providers and people living with COPD.
Dr. Yasemin Türk is one of the program leaders and, in addition to being a pulmonologist, she is also a researcher at Franciscus Hospital in Rotterdam. She works daily with people with severe COPD and, as a healthcare professional, is very familiar with the condition. “It’s a vulnerable group with a significant illness burden, who often feel limited and unwell due to their condition. Actively involving your research group and keeping them informed is therefore especially important to keep them motivated.”
This interview is the fifth in a series with practice partners from the transdisciplinary Medical Delta programs and living labs.
Could you briefly tell us about the goals of the Medical Delta program PASTEL?
“Chronic Obstructive Pulmonary Disease (COPD) is a progressive lung condition that causes breathing difficulties due to damaged lungs. Our program focuses on the group of COPD patients who experience the greatest burden of illness, people who suffer from lung attacks and regularly require care, either at our outpatient clinic or through hospital admissions.
We assume that e-health can support patients, but it has not yet been proven to be effective for people with COPD. That’s why, in the Medical Delta program PASTEL, we are investigating whether e-health can help reduce the number of lung attacks while at the same time easing the workload in healthcare. We want to find out: does it save healthcare professionals time, or does it actually increase their workload?
In addition, e-health offers new opportunities that have so far been little researched or applied. By measuring regularly. For example, aspects such as physical activity and lung capacity — we hope, with the help of Artificial Intelligence (AI), to predict lung attacks in time and enable preventive interventions. A unique part of the program is that we also measure voice use. Through voice analysis, we hope to predict upcoming lung attacks and intervene early.
Finally, we are studying how e-health can best be implemented for this specific patient group. How do patients and healthcare providers experience its ease of use? Why do some users drop out over time? Together with them, we aim to identify and reduce the main barriers.
The PASTEL study is therefore a hybrid program in which research on effectiveness and implementation go hand in hand.”
What role do Franciscus Hospital and you play in this program?
“We are the practice partner in this program. Franciscus is the place where we will include COPD patients, monitor them remotely, and measure the outcomes. Patients who visit the pulmonary clinic or are admitted to the hospital are invited to participate in the program. One group of participants receives standard care, while another group is supported through e-health guidance. This research also serves as the foundation for a PhD project.
We work closely with LUMC, the National eHealth Living Lab (NeLL), and Maastricht UMC+ (MUMC+). These partners support us in implementing e-health applications and contribute to the scientific foundation of the project. We also collaborate with e-health developers and companies that design and provide the necessary technology.
Franciscus Hospital has an expertise center for asthma and COPD. We have extensive experience conducting scientific research with people who have COPD and asthma. These are large patient populations in which we have been conducting studies for many years, and we bring that knowledge and experience into the program.”
How do you involve patients in the program?
“Of course, there are patients who find it enjoyable and interesting to participate in research. But there is also a group for whom it is more difficult to commit. You need to keep them motivated, and that is not always easy. Especially with people who have COPD: it is a vulnerable group who often do not feel well. People are focused on their illness, not on completing a weekly questionnaire.
That is precisely why this is an important part of the program. We want to gain insight into the barriers patients experience when using e-health so that we can remove them and make its use easier.”
Patients advise us on how to motivate others to participate in research.
"At Franciscus, we have a patient advisory council. COPD patients from this council actively contribute to this program. They have been involved from the start in developing the study and will play an important role in drafting the protocol and implementing the e-health applications. The program will run for three to four years, but I expect that we will gain many insights about implementation ‘on the go.’ This will allow us to make it more patient-friendly and accessible.
Patients also advise us on how to motivate others to participate in research and on ways to communicate clearly. These are very concrete and valuable contributions.
Appreciation is essential in this process. This can be done by actively involving participants in the results and keeping them informed about progress. Many people want to contribute to solutions that benefit their patient group, but they need to know what their participation achieves. For example, we organize meetings to share results and show what their efforts have accomplished. This is motivating and strengthens engagement."
What input from healthcare providers and patients have you used so far?
“The patient advisory council has been involved in writing the program plan. From the very beginning, they have contributed ideas on how to make this feasible and provided us with useful feedback. We actually do this for all the studies conducted here.
We have also involved the Longfonds, as well as our professional association, the Dutch Lung Foundation and Tuberculosis Association.
For example, from a researcher’s perspective, we always want to measure and collect a lot of data. Patients in such an advisory council often point out things like: ‘this is just too much,’ or ‘this is not patient-friendly,’ or ‘we don’t see a direct benefit for the patient here.’ That kind of feedback helps us, for instance, to find an optimal balance in the number of questionnaires or the extra tests or actions a patient has to take.”
It will provide a lot of insights that are not only interesting for our program, but also for many other e-health programs.“How this will play out is what we are going to investigate. It will provide a lot of insights that are not only interesting for our program, but also for many other e-health programs. I think we will especially learn a lot in the area of implementation: what barriers do you encounter with both patients and healthcare providers? How do you connect existing systems and records? Once it is up and running and working, we can certainly also explore whether this can be applied to other diseases.”
It is also a system change for hospitals.
“Yes and no. More and more of our healthcare is already taking place outside hospital walls, so it is not entirely new. Multiple specialties are already using e-health systems, and there are good examples where it works well. But there are also examples where it does not work. Why is that? That is what I find interesting.
It can, for example, depend on the patient group. Among COPD patients, there are also people with low health literacy. For them, it is especially important to consider how such a system should be designed. We need to ensure that they continue to have access to good care.”
Because this could also increase health inequalities instead of reducing them.
“Exactly. That is why, when implementing something like this, you have to be very thoughtful about clear pathways so that even these patients can maintain access to care and know where to go with their questions.”
How are healthcare providers dealing with these developments?
“Our pulmonary nurses are generally very motivated and want to help patients. What they are mainly looking for is a system that is user-friendly and does not take more time. The workload is high; they care for many patients, so anything additional becomes extra work. Many innovations are on top of existing tasks, not ‘in place of’ them. That reduces the motivation to start using them.
That is why it is important that an innovation truly replaces something, and that we dare to take that step.”
What could this replace?
“The number of in-person consultations could potentially decrease. If a patient tracks how they are doing weekly, and you monitor it and everything looks fine, a physical consultation is not always necessary. We all sometimes find that a bit daunting, but there are plenty of examples where this is already happening and working well.
On top of that, new preventive possibilities arise, for example through voice analyses. If we can prevent predicted attacks, this can avoid hospital admissions.”
The consortium includes scientists, a hospital, and companies. How is the collaboration going?
“That is actually going very well. It is a unique combination of parties with different backgrounds and interests, and we complement each other nicely.
We have previously collaborated with Curavista, LUMC, and NeLL, and that has always gone smoothly. Curavista has a lot of experience with the e-health system, connecting different devices, and making the data available. From their technical expertise, they can clearly indicate what is possible, while we, from the user perspective with input from healthcare providers and patients, can indicate what is needed and where adjustments are desired. Everyone tries to contribute something valuable from their own expertise.”
The Medical Delta programming places healthcare needs at the center. Why is that an important principle?
“In our program, the healthcare need is very clear: there are too many patients and too few healthcare providers to continue supporting everyone in the same way as before. Something will therefore need to change, and e-health can be part of the solution.”
There are too many patients and too few healthcare providers to continue supporting everyone in the same way as before.
I think part of the patient group is genuinely open to it. They do not want to come to the hospital unnecessarily, are willing to take more personal responsibility, and want insight into their health. It is interesting to investigate who these patients are.
It is also important to know to what extent patients still expect the traditional form of care. But honestly, I think there are very few people like that left.”
How do you notice that this is a Medical Delta program? How does it help you?
“Medical Delta gives me access to the expertise I need. For example, through Medical Delta, I came into contact with Digizo and started working more closely with NeLL. Medical Delta also supports us with an innovation manager who provides input, shares her experiences with implementation, and alerts us to additional funding opportunities. That is very valuable.
The collaboration within a Medical Delta program ensures that you are not on your own; you have a team around you and feel connected and supported. It is not just a funding body, but an organization that embraces the project.”
What have you learned from the consortium partners so far? And what have they learned from you?
“I have mainly learned to look at things differently. As a physician-researcher, I am used to thinking from the patient’s perspective, while an entrepreneur focuses on feasibility and whether something is financially sustainable in the end. The organizational aspect is also much larger than I had realized, and I am still learning a lot about that. I learn a great deal from the companies in our consortium.
Conversely, they learn from me what is needed from a hospital and patient perspective. That an e-health system must not only function properly, but also actually be used in practice.
That is how we learn from each other.”
