The role of patient organizations has changed significantly in recent decades

Patient groups have seen their roles change significantly in recent decades, moving towards the "production of a service" to society, a concept developed at scientific meetings cancéropôle Ile-de-France, Paris.
History
Patient groups have been completely changed by the lightning therapeutic advances of the past 30 years, found Nicole Alby, president of the association against breast cancer Europa Donna, in the introduction to a session entitled "Cancer and commitment."

Recruitment of civil society actors, the terms of their engagement, and missions organizations evolve, adds the sociologist Lionel Pourtau, the Institut Gustave Roussy (IGR, Villejuif).

To give an "overview of the changing role of associations, and therefore people who compose it," says sociologist starts and four illustrative dates:

- 1918: Birth of the League against Cancer, which supports research and that volunteers are asked to provide financial support;

- 1956: Start of cripples voice, an association that is not organized around the "disease cancer" but around a "particular problem", ie life after a laryngectomy;

1995 - creation of SOS Asbestos, marking according Lionel Pourtau the beginnings of health democracy struggling to recognize the rights of patients and attack players considered responsible;

- 2005: Birth of the association set against the Gist, "which will be positioned on the co-production of standards and the popularization of science with the doctors."

To take it as a "how-to" angle, could we not see the associations, in this context, in terms of service producers and studying the providing and how? Suggests the researcher.

Professional associations to
In associations, it is the volunteers and workers who produce the services, says Lionel Pourtau. However, the operation of an association will not even if it is composed mainly of volunteers or if volunteers are only supports a professional and employed, he puts forward.

Volunteers can be more in touch with society. If they are many, this can be taken as evidence that the association is a strong player in the civil society, says the sociologist.

The most common discourse is that of sustainability and professional services, with the idea that we can discuss, according to him that employees give a "red and solidify the business of the association. Everyone gradually seeking additional ways to engage employees, "he points.

However, there is a strong "porosity" between labor and volunteer with "people who start out as volunteers and take responsibility when changing permits" or, conversely, "who, after finishing their careers professional, continue their involvement as volunteers in community structures. "

"This porosity must be taken into account," warns Lionel Pourtau.

"In other areas, the bulk of volunteers is young to old retirees, 57 years older, who have a special relationship to the training," he develops. Responsible for training volunteers associations would have brought him the reaction of some of these new volunteers, "it is not at my age I'm going back to school."

"We must take into account these behaviors and expectations then," insists the researcher.

He then proposed to "complete a volunteer with traditional sociology sociology of producer service through a combination of health," and "conceptual locks up (volunteering in this case) that display a genuine sociology of associations Health cancers ".