Category ‘Health services research’ – iKNOW
Project leads: Dr. Dorothee Speiser and PD Dr. Friederike Kendel (Berlin, Charité)
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Development and evaluation of an online-based counseling tool for BRCA1/2 mutation carriers
Women who carry a BRCA1 or BRCA2 mutation have access to a range of screening and preventive measures, including prophylactic surgery. A thorough understanding of the risks involved is essential so that women can make an informed decision.
Genetic counseling remains hugely challenging, and involves the communication of highly complex information regarding a woman’s risk of developing different types of cancer. Physicians have to explain complex information to counselees, including disease risk over different time periods and guideline-based advice regarding possible treatment options. In most cases, counseling sessions are restricted to 45 to 60 minutes. The situation is further complicated by the pace of scientific progress, which results in rapid changes to the evidence base.
As part of the iKNOW project, researchers will develop and evaluate an online conseling tool that shall:
- Support physicians in providing a standardized and evidence-based counseling service.
- Present highly complex information in a structured way, using simple language. Store relevant content and make it accessible even after the end of the consultation.
- Have the capacity to allow relevant adjustments to the risk calculations and information on risk management strategies available, thus ensuring consulting physicians the access to up-to-date information in a simple-to-understand format.
The project has been awarded approximately €740,000 in funding over three years. If successful, the counseling tool will be adopted and used as part of standard practice. The same concepts will then be applied in other relevant areas.