Healthcare is under pressure due to rising costs, ecological limits, and staff shortages. As a result, more responsibility is shifting to the patients themselves. Professor Judith Rietjens is researching how we can best shape this transition — from care for people to care by people. “For me, shared self-reliance is the central theme,” she says.
Judith Rietjens is Professor of Design for Public Health at TU Delft (Faculty of Industrial Design Engineering) and is also affiliated with the Department of Public Health at Erasmus MC. She was recently appointed as a Medical Delta Professor, with a position at Leiden University (Faculty of Social and Behavioural Sciences).
What does being a Medical Delta Professor mean to you?
"A great honor! To me, it also feels like a recognition of the work I've been doing for many years. I work in two places: at Erasmus MC for the past twenty years, and since 2022 also at the Faculty of Industrial Design Engineering at TU Delft. In addition, I have already been active within various Medical Delta programs.
With this appointment, Leiden University has also been added, within the section of Health, Medical, and Neuropsychology. It feels like a return to my foundational discipline. I was trained as a health scientist and hold a master's degree in mental health studies. My career began in the care for people with incurable illnesses, always with a strong focus on medical psychology. That connection is now taking shape again, and I’m thrilled to be part of it once more. It opens doors to new knowledge and expertise within Leiden, which greatly enriches my work."
Could you briefly describe your area of expertise?
"In my research, I focus on person-centered care: how can we organize healthcare in a way that truly aligns with what people find important? It may sound obvious, but in practice, care often does not match people's wishes and needs.
"Previously, I mainly approached this issue from the perspective of the consultation room: how do doctors and patients make decisions together? How do they plan care together? But over time, I realized that much of what happens actually takes place outside the consultation room. People spend most of their time at home, out of sight of doctors and hospitals. They experience illness there, together with their loved ones. This realization has broadened my research: I now also focus on the role of informal caregivers and how people and their environment cope with illness together.
Shared self-reliance is the central theme for me, and I want to shape the new chair around this concept. Healthcare is under pressure, and more and more responsibility is falling on individuals, whether we like it or not. Therefore, it’s crucial that we do this together. As informal caregivers, but also, due to the increase in the number of people needing care, we will have to care for one another as a community. Within neighborhoods, among friends, and in a broader social context.
The demand for shared self-reliance is growing. It is often seen as an ideal, but we are much closer to the point where it is truly needed than we think. It is already happening, but we need to scale it up. In the next ten years, we really need to get to work on this and shape it together.”
How has your collaboration with TU Delft influenced your research?
"I've started looking more broadly at the healthcare system as a whole. How do formal and informal care connect, where are the bottlenecks, how can we make this more tangible, and how can we design interventions and processes to streamline care?
For example, I collaborated on an interdisciplinary project with LUMC, TU Delft, and Erasmus MC. We studied the decision-making process surrounding pancreatic cancer and mapped out all the steps. We discovered numerous barriers that patients face: uncertainties about who is responsible for which part of the care, unclear signage, early morning appointments for people traveling from afar, long waiting times between consultations. These practical obstacles make it incredibly difficult for patients to make informed decisions about their treatment.
Additionally, there is the enormous amount of conflicting information that patients receive. What should they believe, and who can they trust? People search for information online, receive advice from family, and hear different things from different doctors. How can we better streamline this process so that patients can make well-informed choices in this difficult situation?
Her husband had cancer, and later she became ill herself. Her perspective inspired me to collaborate more often with designers.
In this project, I worked with designer Ingeborg Griffioen from TU Delft. Ingeborg brought a unique combination of design thinking and healthcare experience. She had a personal connection to the topic: her husband had cancer, and later, she herself became ill. Her perspective inspired me to collaborate more often with designers. They look at problems through a completely different lens and can help reframe them: determining what the real problem is and which direction to pursue for the solution. Designers work much more iteratively. They develop a prototype, test it, adjust it, and improve it step by step."
How can you effectively involve practice in research?
"Collaborating with all stakeholders, including the patients themselves, is essential. Medical technology cannot be seen as something that is first developed in isolation and then introduced into practice. It must be created through co-creation.
We are studying how to best involve patients in research. Do you just have them fill out a questionnaire, or do you also involve them in discussions with researchers? What topics should they be asked to contribute to, and which should they not? How can we compensate them for their valuable insights and time?
These kinds of questions also apply to community participation. How can you engage larger groups of people in research when healthcare is already under pressure and people have limited time? No one is against involving practice. But how do you do this in a way that is sustainable and not just a one-time event? It should not become a mere checkbox for funders. Developing methods for structural integration is extremely valuable for the innovation ecosystem of Medical Delta.
This caused friction: the doctors found it time-consuming to explain everything, while the patients wondered why they were there if they didn’t understand it anyway.
Doing this well is quite complex. A while ago, we had a focus group with medical specialists and patient representatives. The specialists immediately delved deep into the subject, using many technical terms and complex details that were impossible for the patients to follow. This caused friction: the doctors found it time-consuming to explain everything, while the patients wondered why they were there if they couldn't understand anything. So, you really have to shape this carefully: clearly translate issues and discuss matters where patients can actually contribute."
Why is it important to involve practice?
"Science is under pressure, both financially and in terms of the trust it enjoys in society. In the Netherlands, it's still manageable, but in countries like the US, the credibility of science is a serious issue. That's why it's crucial to make research as relevant as possible, and this importance is only growing. By collaborating with practice, we can better address the real needs and concerns within society."
How has collaboration within Medical Delta been so far?
“Within the scientific program Healthy Society of Medical Delta, we are working with a large group of researchers and societal partners to address how we can keep society as healthy as possible. An important partner in this is the Province of Zuid-Holland. We began this collaboration with a strong foundation: together with a group of researchers, we first developed a shared vision and funding strategy before adding research programs. Thanks to this careful start, the collaboration is now solid. This is a great example of how a sustainable partnership can be successful.
I am primarily looking for new collaborations with partners who recognize that design can be a valuable and relevant approach. Partners who are willing to explore new methods and think outside traditional frameworks. This is especially important when dealing with so-called wicked problems—complex, multifaceted issues that cannot be easily solved. At this level, where you look at systems as a whole, designers are fortunately being involved more and more often.”
What motivates you to collaborate with others outside your field?
"I increasingly see that the problems we are researching are actually much bigger and interconnected. That’s why I want to focus more on the big issues. A massive healthcare crisis is coming, and we need to prepare for it. Research can help with that, but we need to dare to face the monster in the mouth. Our healthcare system was designed by people and can be redesigned. This requires persistence, but I’m hopeful because I see many motivated people with good initiatives around me.
Halfway through my career, I made the decision to focus on these larger issues. And that can only be achieved by collaborating with different disciplines. It's important to understand on a small scale what happens with the patient, but at the same time, map out the bigger picture— the care pathway within the broader healthcare and sociocultural system—and see how different stakeholders interact in this field of forces. That requires a lot of expertise and collaboration. You need to know who you need and bring the right parties together to work on it."
What will we notice from your work and these collaborations in the future? What do you hope to have achieved in five years?
"I think that there will be more awareness about the necessity for people to play an important role in taking care of their own health and that of their loved ones. Together with artists Arlon Luijten and Micha Hamel, I’m working on a project in which we create awareness and actionable perspectives for the transition from a work-life balance to a work-life-care balance.
In other projects, together with Ida Korfage from Erasmus MC and Anne Stiggelbout from LUMC, we support people in becoming more actively involved in decision-making processes. A good example is the decision aids we’ve developed, such as “Explore your wishes for care and treatment” on Thuisarts.nl. These are already widely used, and I expect this to grow even further in five years. In another European project, we are developing predictive models that make the effects of certain treatments more understandable. The goal is to implement these models in a way that they can be used across Europe. I expect that there will be increasing attention to the sustainability of the implementation and scaling of our innovations.
As we face increasingly complex societal challenges, the need for an integrated approach to different forms of knowledge has never been greater.
What I ultimately hope for is that transdisciplinary collaboration will have become the norm in five years. As we face increasingly complex societal challenges, the need for an integrated approach to different forms of knowledge has never been greater. It should no longer be an exception to collaborate with patients, researchers, and societal stakeholders, but rather an integrated part of the research process. By setting a good example, removing practical barriers, and experimenting with how to organize such collaborations, I hope to contribute to this.”
What role does collaboration between university, applied university, and vocational education play in your work?
"I have been collaborating with Erika Witkamp from Hogeschool Rotterdam for a long time on a joint research line about self-management, self-direction, and the role of loved ones, where we share PhD candidates. This collaboration is incredibly valuable. Together with Erika, we are investigating how we can further develop the concept of self-reliance into mutual reliance."
Whose work has truly surprised you and why?
“Ingeborg Griffioen, whom I mentioned earlier, once told me: 'Judith, you have an inner designer.' Thanks to her, I dared to make a major shift in my work. Shortly after, she unfortunately passed away, but that moment was very defining for me.
I also find the work and approach of Andrea Evers very strong. On one hand, she is an excellent scientist within a very specific and well-defined field. She combines that sharp focus with broader scientific and societal roles, such as in the broad research program Healthy Society. She has really brought that program to life and is fully committed to it. That combination of focus and broad vision is something I can certainly still learn from.
These are just two examples, but there are so many people who do incredible things and continue to inspire me."
