At the University of Twente, we strive to connect our scientific research with society. One of the ways we do this is through UTwente.nl/meedoen (MEEDOEN), a platform for research projects that seek input from citizens—in any form. A great example of this is the Direct-DCIS project, which successfully recruited co-researchers.
Direct-DCIS
Direct-DCIS is an eight-year NWA project focused on research into Ductal Carcinoma in Situ (DCIS), a possible precursor to breast cancer. This consortium, led by the Netherlands Kanker Instituut (NKI), involves close collaboration between UT and organisations like Nivel and the Dutch Breast Cancer Association. Various departments at UT are involved, including DesignLab and BMS through Ria Wolkorte (Assistant Professor, BMS), Sabine Siesling (Professor, BMS, and affiliated with IKNL), Miriam Mogana (PhD student, BMS), and Techmed. Twenty co-researchers diagnosed with DCIS were found for this project.
In a conversation with Maya van den Berg, Program Manager at DesignLab and responsible for guiding co-researchers in this study, we learn about her experience with MEEDOEN.
What Does MEEDOEN Offer Researchers?
“MEEDOEN allowed us to create a recruitment page where all necessary information was clearly presented. There’s collaboration on the text to ensure everything is posted online in an appealing and complete manner. Participants (in this case, co-researchers) all come into the same place, making it very organised,” Maya explains. "It wasn't an anonymous sign-up form; there was someone behind it who observed and guided participants through the process. This made it inviting and motivated people to participate." Thanks to MEEDOEN, enough participants were quickly recruited.
Positive Responses from Participants
Maya guides the Direct-DCIS participants throughout the project as co-researchers. Maya says, “This is truly citizen science, and it’s wonderful to see how valuable that is.” Participants indicated that they felt heard and valued. In a safe and constructive environment, they can share their personal experiences, which fosters a sense of community among participants. Maya adds, “The women find a community they can identify with, which enhances the value of their participation.”
The Process: From Initial Meeting to Monthly Updates
After recruiting participants through MEEDOEN, online introductory interviews were conducted. A few participants dropped out along the way—they were either too busy or had a different expectation of the collaboration. A kickoff meeting was then organised for 15 co-researchers to introduce them to the project and discuss the approach. Monthly meetings, still ongoing, followed to discuss progress and allow everyone to share their findings. These meetings not only provide insight into the research process but also give co-researchers the opportunity to actively exchange their experiences.
What Are Our Takeaways for the Future?
The success of Direct-DCIS through MEEDOEN demonstrates the value of a space where citizens can easily sign up for research. "It works!" says Maya. Researchers can not only recruit participants for their studies, but they can also provide feedback on the project's progress and outcomes. In this way, open communication is fostered, which is essential for successful citizen science.
Want to know more?
With MEEDOEN, we hope more researchers will take the step to involve citizens in their research, in any form. It offers, for example, a unique opportunity for co-creation and strengthens the connection between UT and society. MEEDOEN is coordinated by Citizen Science Hub Twente. Want to know more? Visit utwente.nl/meedoen or contact Saskia Baas.
*The Direct-DCIS consortium brings together a large group led by the Netherlands Cancer Institute (NKI). The project team also includes several university medical centers and companies. Lead coordinator for the consortium: Prof. J. Wesseling (Netherlands Cancer Institute). The consortium includes the Netherlands Cancer Institute, NWO Institutes Organization, Radboud University Medical Center, Leiden University Medical Center, University Medical Center Utrecht, Erasmus University Rotterdam, University of Twente, Delft University of Technology, NIVEL - Netherlands Institute for Health Services Research, Department of Research, Netherlands Comprehensive Cancer Organization (IKNL), Dear Health, IQVIA, ScreenPoint Medical, BOOG - Breast Cancer Research Group, Dutch Breast Cancer Association, RIVM - Center for Population Screening, PALGA Foundation, and the Netherlands Comprehensive Cancer Organisation.
Image credit: CRUK, Cancer Grand Challenge PRECISION Consortium
