The patient voice

Lymphedema has a huge impact on the quality of life of breast cancer patients, hampering daily activities. Therefore, predicting lymphedema in patients at risk and possibly preventing or mitigating the severity, is of great importance. In PRE-ACT, the AI-model incorporated in clinical practice with supportive communication has both a data science as well as a clinical side. From a clinical side, clinicians are part of the consortium as well as patients. One of the patient representatives is Cheryl Roumen.

Cheryl Roumen: “Within PRE-ACT, I am considered an equal partner and asset to the consortium. In the 1-year AGM meeting we held in October, the atmosphere was constructive and easy-going, which allowed for dialogues to make decisions and state important actions. Particularly, we discussed the clinical trial, patient communication and how explainable AI can be intertwined. Although, the challenge of developing a good model and testing it in clinical practice is not a simple task, the consortium is well on its way to reaching important milestones, such as having a model, the patient communication app and starting the clinical trial. It is an exciting journey."

Cheryl Roumen is a former breast cancer patient who takes part in the scientific expert group of the Breast cancer Foundation in the Netherlands. She has been a patient representative in several (inter)national research projects and has a PhD in human biology. She currently works as a senior researcher and lecturer at Maastricht University in the field of Health and Digital Technology. More information can be found at www.cherylroumen.com