2023-06-13 15:30:53
If you as a patient are asked to participate in research, it can be quite exciting. Nevertheless, many patients participate in medical scientific research. Especially to contribute to a better treatment of patients in the future. The patients who participate in studies are often very involved, but are by no means always kept well informed of the results of the research. This can and must be improved, according to researchers Dr. Floris Voskuil and Prof. Dr. Max Witjes. They organized an information afternoon for the patients participating in their research.
Involved and curious
‘Our patients are extremely important in our research. They do a lot, are extremely involved, empathize and are curious about the results,’ says Witjes. ‘And that while they are in an extremely difficult and emotional situation in which a lot is coming at them. Then we also owe it to them to share the results of the research in an understandable way. That’s why we decided to organize a special afternoon for our patients.’
Educational for patients and researchers
During this afternoon, the patients were included in the results of the study they participated 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 stand in front of a whole room of people you do it all for. How wonderful it is to do this in such a personal way’, says Voskuil.
The afternoon was not only educational for patients. ‘It also gave us insight into how the patients experienced the study,’ says Voskuil. ‘When you involve patients in your research, it is extremely important to include the patient’s perspective in the study design. The willingness of patients to participate and the desire to help others is high. You have to think about what you ask of patients. For example, if they receive heavy treatment, you should not ask them to come to the UMCG several times. By consulting with the patient association at an early stage, you gain insight into this.’
Contribute to the future of others
Ali Boes-Ziel is one of the patients who participated in the study by Witjes and Voskuil. She shared her story during the information afternoon. ‘When I was asked to participate in the study, I was hesitant. So much comes at you when you’re sick. Uncertainty about the future, fear of what is to come and reactions from your environment. Thanks to the pleasant conversations with Dr. Witjes and my wish, even if not myself, to better help future patients, I decided to participate. If you have participated, you would also like to know what this has yielded. 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, the next steps and experiences were exchanged.
Making the invisible visible
Voskuil, Witjes and colleagues investigated whether a luminous substance makes tumors more visible during surgery than when viewed with the naked eye. This may allow the surgeon to better recognize the tumor, remove it, and assess whether the tumor has been completely removed. If the tumor is not completely removed, additional surgery or follow-up treatment with chemotherapy and/or radiation is often required. By making the tumor more visible, this may be prevented.
The research was funded by the Dutch Cancer Society and was carried out at the UMCG’s Oral, Maxillofacial and Maxillofacial Surgery department.
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