Professor Judith Rietjens. (Photo: Geisje van der Linden)
Professor Judith Rietjens: “Talking about cancer is not an easy thing.” (Photo: Geisje van der Linden)

Who are the people who study or work at TU Delft? We meet them in Humans of TU Delft. This time: Professor Judith Rietjens aims to improve the cancer patient journey.

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“I started working at TU Delft a year ago as Professor of Design for Public Health. I’ve also been working for some 20 years at the Department of Public Health of Erasmus MC, so it’s a combined job. It has been an inspiring and fruitful experience so far. I think that in public health we can use a lot of design principles to enrich our methodologies and approaches, and it is my mission to combine the fields a bit more. I also want to bring some principles of public health to the world of design, like how you evaluate things that you design in healthcare and how to do that in a robust and evidence-based way.

The 4D Picture Project is about redesigning care paths of patients with cancer and improving shared decision making. I’m the principal investigator of the project together with two colleagues, Ida Korfage at Erasmus MC and Anne Stiggelbout at Leiden University Medical Center. We have all been working in the field of shared decision making for quite some time. The preferred way of making decisions in healthcare is that patients and healthcare professionals make decisions together. But what we usually see in practice is a lack of involvement from patients to really consider their preferences and to understand all the treatment options and then make a decision that fits their needs.

We see a lot of room for improvement if you zoom out to see in what context people make such complex health care decisions. We see from prior research that it’s not usually one decision but it’s a trajectory of decisions. Patients are under a lot of emotional pressure, feel disempowered, and their care paths are complex. There are a lot of people involved and it's often unclear who is responsible for what part. So the complexity of making decisions in healthcare is much greater than prior studies assume.

‘Metro Mapping is helpful for patients to see what kind of paths they can navigate’

We are working with designers who have a lot of experience in working with complexity and mapping out the complexity. Mapping out a patient's care path is a first step to making it more resilient, more streamlined, so that decisions can be better made because we can identify at what moment a certain decision needs to be made. There is a methodology called Metro Mapping that was developed on a small scale in the past and we are now further developing it for use in an international context. It’s a method to visualise care paths, like a metro line. It’s helpful for patients to see what kind of paths they can navigate.

We also work with data scientists developing two types of data driven decision support tools. There is a lot of data that can be used to make better decisions. For example, patients and healthcare professionals can look at data of patients like them and see what kind of outcomes certain treatments have. The data scientists are very good at making prognostic models, but we need to look more at how these models can actually be implemented in clinical care paths. And we work with huge amounts of patient experience data, for instance from forums where patients discuss their experiences with their illness or certain treatments. With machine learning, you can extract themes people talk about and from that we will look at what metaphors people use when they talk about cancer.

Based on this analysis, we will make a ‘Metaphor Menu’ so people can see how other people address their situation and their illness. Together with their loved ones or their clinicians, they can choose what kind of metaphor fits their situation and we hope this helps them have discussions about the treatments that they need to decide on. Shared decision making is also about having that conversation, but it's so sensitive and taboo in many cultures, including in ours. Talking about cancer is not an easy thing.

We were recently nominated for the Computable Award. It’s a platform for IT professionals and the award recognises companies, technologies, projects, and individuals who have distinguished themselves in the past year. We’re really proud of this nomination and people can vote (in Dutch) for us until 5 October. The project is receiving a lot of attention, so that's good because we see it as an opportunity to connect with a lot of researchers and the wider community. Through this project, we hope to give a lot back to the community and with designers on board, that surely will help.”

  • Picture Project is nominated for the Computable Award. You can vote (in Dutch) until 5 October.

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