On Wednesday 23 September, the NWO-funded project 'BRUG' by Amsterdam Public Health (APH) and Amsterdam Reproduction & Development (AR&D) researcher dr. Fabiola Müller concluded with the premiere of two videos with which she aims to promote inclusive research. Patients and relatives with a migration background are often underrepresented in research. As a result, we miss important perspectives and care cannot be properly tailored to everyone.

In BRUG, cancer patients and relatives with a migration background collaborated with oncology researchers in co-creation sessions. The aim was to foster mutual understanding and explore each other's perspectives. The co-creation sessions yielded not only the two videos, but also remarkable insights:

Good intentions don't always work out well - Researchers indicated that they sometimes find it difficult to invite every patient who is eligible for their study to participate, for example because the consultation is already difficult or very emotional. One participant responded: "That is discrimination! We want to be asked too."

Confusion about the difference between medical and scientific research - For many participants, the difference was not clear. Moreover, negative experiences in medical care turned out to fuel distrust towards scientific research.

Language is not the only barrier - Beneath the surface, there is also distrust of care and research, and insufficient sensitivity of researchers to cultural differences. For example, discussing cancer can be taboo, for instance when cancer is seen as a punishment from God.

Two videos

The co-creation sessions served as the basis for two types of videos:

  • Video for patients and relatives - This video clearly explains scientific research and is available in Dutch, Turkish, Arabic and Berber. The video is suitable for recruiting participants or informing people who have not previously been involved in research.
  • Video for researchers - This video addresses the role of culture and attitudes towards research, with concrete tips. The video is available in Dutch, with English subtitles.

What's special is that the participants determined the content themselves and appear in the videos. The videos were developed in an oncology context, but are also applicable in other disciplines.

Tips for researchers

In the video for researchers, a participant shares concrete tips:

  • Invest time in building trust;
  • Know the culture of your participants and be aware that there are differences;
  • Be aware of possible taboos and shame surrounding illness;
  • Make clear what the difference is between medical and scientific research;
  • Keep in mind: even without a language barrier, barriers remain.

Watch, share and use the videos

Videos for (potential) study participants: 

Videos for researchers: