What is the role of Institut Curie's Patients’ Committee?
The advantage of this entity, which is optional and not framed by law, is that each hospital can set its own missions and principles of operation, in a written charter with patients. This “experimental" aspect allows for more creativity. Each participant is responsible. In many cancer treatment centres, and this was also the case at Institut Curie, one of the fundamental missions of these committees was to revise the medical informational documents written by the centre for them. Moreover, at Institut Curie, a survey conducted in 2014 showed a very high level of patient satisfaction with respect to this type information. But there are many other potential missions.
Can you give us an example?
We were fortunate that our directors fully embraced and participated in this collaborative aspect. Sometimes, the director requests an opinion or is seeking participants for various hospital projects. At other times, the group itself conducts a project. One example is the production of short films based on testimonials from the group concerning situations experienced at the hospital. These films are meant to foster reflection internally with hospital staff. Their generic title is, “We Are All Struggling.”
What is your role?
Primarily, to encourage others to speak up! That means creating circumstances in which all members feel free to express themselves and making sure that each of them does so. The meetings have nothing in common with “support groups,” however. Discussions reflect certain themes that we must prepare and share with people from the hospital who feel a real need for this type of interaction from time to time. This requires a real effort by the committee members. I greatly admire their perseverance and the maturity of their thinking.
Giving patients a chance to express themselves would seem to be a “hot” issue?
Yes, fortunately. There is a trend in this direction that is beginning to be reflected in laws.
But the important thing for everyone is to achieve a genuine spirit of collaboration over the long term. There are only patients or their families on the committee; it is “their” group. They are the ones who create a sense of solidarity: if one of them is designated to participate in a hospital project, he or she gets back to the others on a regular basis so that everyone feels involved in the spirit and development of the project. And to make sure that the committee remains independent, it reports directly to the director of the Hospital Group, who attends a meeting at least once per year and receives all the minutes.
How are the participants recruited?
If you have been treated for cancer at Institut Curie, and you have the time to devote to it and the ability to work in a group, you are already a good candidate! In actual practice, the first step is to contact me for an interview. This meeting helps to clarify mutual expectations and determine the best time to begin this experience.
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