'If you participate in research, you also want to know what difference it made'

As a patient, being asked to participate in research can be quite intense. Nevertheless, many patients participate in medical scientific research. Mainly to help ensure that other patients can be treated even better in the future. The patients who participate in studies are often very involved, but not always properly informed about the results of the research. This can and should be improved, decided researchers Dr Floris Voskuil and Prof Max Witjes. They organised an information afternoon for the patients who participated in their research.   

Involved and curious  

'Our patients are very important in our research. They do a lot, are incredibly involved, sympathise with the research and are curious about the results,' says Witjes. 'And that while they are in a difficult and emotional situation with a lot going on. We owe it to them to share the results of the study in a comprehensible way. That is why we decided to organise a special afternoon for our patients.'   

Informative for patients and researchers  

During this afternoon, patients were presented the results of the study they were participating in. Researchers and doctors talked about the results and future studies, and patients shared their experiences. ‘It is very special to share research results in this way. You are in front of a whole room of people you are doing it all for. How nice it is to do this in such a personal way,' says Voskuil.   

The afternoon was not only informative for patients. 'It also gave us insight into how patients experienced the study,' says Voskuil. 'When involving patients in your research, it is incredibly important to include the patient's perspective in the study design. Patients’ willingness to participate and desire to help others is big. You have to think about what you ask of patients. If they receive heavy treatments, for example, you shouldn't ask them to come to the UMCG several times. By consulting a patients' association at an early stage, you gain insight into this. ´   

Contributing to the future of others  

Ali Boes-Ziel is one of the patients who participated in Witjes and Voskuil's study. She shared her story during the afternoon. 'When I was asked to participate in the study, I hesitated. There is already so much on your mind when you are ill. Uncertainty about the future, fear of what is to come and reactions from those around you. The pleasant conversations with Dr Witjes and my desire to be able to help future patients better, made me decide to participate. Then, when you have participated, you also want to know what this has brought. Not only for you but also for future patients.'  

The afternoon was highly appreciated by the patients present. Many questions were asked about the results, next steps and experiences were exchanged.   

Making the invisible visible  

Voskuil, Witjes and colleagues investigated whether a fluorescent substance makes tumors more visible during surgery than when looking with the naked eye. This may allow the surgeon to better recognise the tumor, remove it and assess whether the tumor has been completely removed. If the tumor is not completely removed, additional surgery or post-treatment with chemotherapy and/or radiotherapy is often needed. By making the tumor more visible, this could potentially be avoided.   

The study was funded by the KWF and conducted at the Department of Oral and Maxillofacial surgery at UMCG.