Introduction/Background Nowadays much is said about the patients voice when it comes to deciding on the best suitable treatment: What are the options from a medical perspective? What counts from the patients perspective? Must one seek every possible treatment or are other factors just as important?
Methodology Stichting Olijf cannot support every patient. Our patient advocates are limited in their possibilities due to health issues, energy required for family and work. Despite this we found ways to voice the patients perspective, that reach us through our media channels (internet, fb, email, phone, presentations).
Results In this triptych (poster-series of 3) we would like to illustrate our practice and its results of patient participation fron three perspectives:
Participation in medical research: from the phase of application and during the project - our patient advocates are involved in every step.
Contributing to the revision of Dutch gynaecological oncological guidelines and adjusting the patientinformation to the patients‘ needs.
Involvement in ppecial projects such as:
Participation of our patient advocates in the development of two ‘choice tools’ for advanced ovarian cancer including quality of life issues: 1) the issue of ‘chemo or debulking operation first’ in a combination therapy; 2) the aftercare regime: how to choose for a periodical or a health-related aftercare regime.
Hearing at the Dutch Health Council: Olijf pleaded for HPV vaccination for all children, not only girls.
Testimonials of patient advocates at the Dutch Care Institute on their experiences on the HIPEC procedure and the risks they encounter when having to travel to other countries in order to get their desired HIPEC therapy.
Conclusion The patients voice is more and more included and we are heard in the development of research designs, (medical) guidelines and patient information.
Disclosure Nothing to disclose
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