In our centre, we collaborate on a daily basis with the so-called "patient partners" who, on a voluntary basis, participate in the research.
These patients may or may not represent a patient association.
They contribute to improving the care of patients with neurofibromatosis type 1 by transmitting knowledge based on their own experience.
There are university courses allowing patients to become "patient experts" in the hospital setting.
The status of patient expert requires formal training. There are two ways to get appropriate patient expert training:
- Some chronic-disease patient associations provide their own training to volunteer patient members.
- Few universities have set up diploma courses: University Certificate (UC), University Diploma (UD), Masters.
Ultimately, the Henri-Mondor Referral Centre would like to offer training of "resource patients" so they can become patient experts.
Three available universities to validate your training
Testimonial: be a patient expert
I attended two meetings. One of them involved, for instance, participating in the update of a questionnaire in collaboration with other patientexperts and the clinical psychologist. The questionnaire had been originally developed by the doctors.
We gave our opinion on the questionnaire based on our personal experience. We rephrased some of the questions to make it seem truer to our feelings and our experience.
Our participation makes it possible to provide doctors with an additional or even complementary point of view: that of the patient. This allows them to approach the disease from all these angles.
Some patients have known about the disease longer than doctors; and right from the inside. It seems very interesting to me to be able to express our feelings, which are not necessarily the same ones that the medical profession assumes (both physically and psychologically).
The creation of this patientexpert role showsan open-mindedness of the medical profession. I find it really considerate for physicians to seek patients' opinions and call them "experts". It gives importance to what we feel and what we have to say.