Clear instruction, global impact: how a Divi activated patients with rare lung cancer to make essential donations

ROS1-mutated lung cancer is a rare form that mainly affects young women who smoke very little. Fenneke Zwierenga, then a physician researcher and now an elementary doctor of pulmonary medicine at UMCG, studied how this cancer develops and how treatments can improve. This requires body material from patients, for which their active contribution is indispensable. A special Divi (digital information module) from Indiveo played a crucial role.

Image: © Fenneke Zwierenga, Physician assistant in pulmonary medicine at UMCG.

Challenge: three bottlenecks in the process

Patients with ROS1 lung cancer are rare spread across different countries. This makes it difficult to reach these patients and be able to motivate them to donate bodily materials. In addition, traditional methods such as leaflets or paper letters proved inadequate to clearly explain these complex operations and provide confidence in the process. Physicians were sympathetic but not always involved or available to guide patients step-by-step.

"It is a type of lung cancer that only occurs in one to two percent of people with non-small cell lung cancers, especially in young patients, mainly non-smokers. It's really very rare in that respect," says Fenneke.

That disconnect between policy language and practice stood in the way of effective assistance.

Moreover, asking for donation, of pleural fluid or lung tissue for example, is a sensitive subject. Misunderstanding, doubt or fear can easily lead to dropping out.

Fenneke and her team faced three major challenges:

1. How do you activate patients to make their own body material available, in an approachable way, without pressure?
2. How to avoid mistakes in using the donation kit, without medical supervision?
3. How do you reach people in different countries and languages without additional cost or coordination?

The solution: understandable explanations that get patients moving

The Divi as a clear digital guide

The solution was found in a Divi: a digital information module that explains the entire donation procedure in a clear and reassuring way. Instead of overloading patients with leaflets or complicated leaflets, the Divi offered structured, step-by-step guidance in understandable language. From opening the donation kit to using cooling elements, each step was clearly explained, with attention to detail and without medical jargon.

What makes the Divi effective is the combination of animation, voiced text and visual explanations in a clear structure. The content was developed by storytelling experts in close collaboration with medical professionals so that medical accuracy and comprehensibility come together. That balance ensures that patients feel taken seriously and can act with confidence.

"There were quite a lot of steps in the donation kit and what to do with it. Thanks to this Divi, people could actually go through this process step by step: I unpack the box, I put that tube in the fridge, I put the cooling elements in the freezer. It's very clear," indicates Fenneke.

Dissemination through trusted channels

Also important is how the Divi was disseminated. Not through doctors or hospitals, but through patient organizations such as the Merels World Foundation. This gave the education a personal and familiar character. Patients who felt addressed contacted their doctors themselves to participate in the study. That voluntary, self-selected step proved more powerful than any top-down instruction.

Internationally accessible, tailored to the target audience

Because ROS1 lung cancer occurs worldwide, the Divi was made available in four languages: Dutch, English, Spanish and German. This made the module immediately usable internationally, without any additional logistical burden. Everyone could follow the same clear explanation, anywhere in the world.

The medical content and tone of the Divi were fine-tuned in collaboration with pulmonologist Anthony van der Wekken and the experience experts at Merels World. 

Image: © Divi ROS1 Merger

Results: valuable yield in a rare field

A surprisingly effective result

In four years, seven complete donations have been received. While that may seem modest in absolute numbers, it is a remarkable success within this extremely rare patient segment.

Patient experiences

What was striking was how smoothly patients got along with the Divi. Despite the sometimes complex medical procedures, there were no reports of errors or confusion. The visual, step-by-step explanation provided patients with exactly the clarity needed to collect, store and send the material independently. This provided confidence, grip and increased their willingness to participate.

"The Divi gave me the confidence to participate. Everything was explained calmly. I felt taken seriously, and that made all the difference," says one ROS1 patient, anonymously through Merels World Foundation.

Experiences like this underscore why the Divi's visual approach was so effective. Where leaflets often get stuck in abstract descriptions, these digital explanations made complex operations accessible and actionable.

These patients' contributions are now part of the OncoLifeS biobank project in Groningen, where their material will be used for future scientific research.

Image: © Dissertation 'Targeted therapies and resistance in lung cancer' Fenneke Zwierenga

Conclusion

What this approach teaches us about patient communication

The deployment of a well-designed Divi not only led to valuable donations, but also gave a new face to patient participation in scientific research. What first seemed complex and distant suddenly became understandable and doable through clear and empathetic explanations. It was this combination of clear communication and international applicability that made research accessible to people who might otherwise never have participated.

Fenneke now continues her career as a physician in pulmonary medicine at UMCG. Her contribution within scientific research continues to be felt thanks to her efforts. New and complete data are available, paving the way for deeper insights and future improvements in the treatment of this rare form of lung cancer.

Would you also like to contribute or learn more?

Are you working on a study that actively involves patients? Or are you considering contributing to ROS1 lung cancer research as a patient yourself? 

📩 Please contact us at ros1@long.umcg.nl or through Merels World Foundation. Together, we make scientific research more accessible and humane.

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