DIRECT-DCIS | DYNAMIC INTEGRATIVE RISK FOR ECASTING TO CONQUER OVERTREATMENT OF DUCTAL CARCINOMA IN SITU
GOALS OF THE PROJECT:
- Build a strong community of women with DCIS as co-researchers and advisors
- Involve women in creating clear communication materials
- Evaluate participation to guide future patient-led cancer research
Background & Description:
The DIRECT DCIS consortium aims to develop a self-learning methodology combining eXplainable AI (XAI) and dynamic prediction modeling, inspired from optimizing weather forecast and climate change modelling, to predict the risk of DCIS becoming malignant. This approach will reduce unnecessary treatments, preserve quality of life, and save millions annually in healthcare costs. The consortium goals will be addressed in 5 work packages. DesignLab is in Work package 5 in collaboration with BMS faculty.
Work package 5: Women’s Participation to Better Shape Practice and Policy In the DIRECT-DCIS project, citizens and women with DCIS are participating from the start and throughout the project in various roles, from advisors and experienced experts to co-researchers. WP5 aims to build a strong community of women to collaborate in all phases of the research in the project. The experiences and perspectives of these women will:
- inform patient preference and cost effectiveness research (WP2)
- feed the development of the dynamic prediction modelling techniques to support the decision-making abilities of the forecasting tool (WP3)
- ensure that the methods and tools in development are better aligned with end-users (WP2 and WP4).
Ultimately, WP5 aims to ensure that the expertise and experience of women with DCIS is already embedded in the research process to facilitate more relevant and feasible outcomes. For instance, women will be involved in the development of comprehensible communication materials, and reflect on research activities in groups discussions. Finally, evaluation of their participation in this long-term research project will provide guidance on patient-led citizen science in cancer research projects in future research.
CONSORTIUM:
- Netherlands Cancer Institute (NKI)
- NWO Institutes Organization
- Radboud University Medical Center
- Leiden University Medical Center
- University Medical Center Utrecht
- Erasmus University Rotterdam
- University of Twente
- Delft University of Technology
- NIVEL - Dutch Institute for Health Services Research
- Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL)
- Dear Health
- IQVIA
- Screenpoint Medical
- BOOG - Breast Cancer Research Group
- Dutch Breast Cancer Association
- RIVM – Population Screening Center
- PALGA Foundation
- Integral Cancer Center Netherlands
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