It was experienced that there are substantial benefits, from both a patient’s and researcher’s perspective, of patient engagement in the research. However, it can be challenging for patients to find appropriate information on their rare disease. Together with patients, researchers can establish centres of excellence as a valuable and reliable source of information. Currently, little has been reported on patient engagement in research in gynaecological oncology.
The evaluation of active patient engagement in this study showed that patients felt strengthened by the research and the interaction with the research team helped them to better understand their disease.
Prof. Murat Gultekin, ENGAGe Co-Chair, cooperated on this research driven by scientists from Utrecht University (The Netherlands).
If you want know more, please read the whole article.