Health democracy in educational program for patients with rheumatoid arthritis
Dr Jean-David COHENa, Mrs Anne-Marie PAINb, Mrs Sonia TROPÉb
a CHU Lapeyronie, b ANDAR
Kouchner Act 2002 defines the health democracy as "the joint participation of professionals, users and elected to the definition of a public health policy to improve the operation and effectiveness of the health system." In the context of therapeutic education, the French High Authority for Health recommends, in 2007 to seek the patients individually and their associations in the design phase, implementation and evaluation of a program specific to chronic disease. This concept has been applied in a program dedicated to patients with rheumatoid arthritis.
The National Association against Rheumatoid Arthritis (ANDAR) acted at different stages:
• A community leader is responsible for the program.
• A volunteer patient joined the steering committee;
• A peer patient educator (PPE) who received 42 hours of training in therapeutic education, as part of a national project led by the ANDAR, joined the team of stakeholders;
• A representative of the association is involved in logistics and gives existing resources by patients;
• Various documents produced by the ANDAR are information carriers.
• The volunteer patient has participated in discussions on program development and implementation of the accompanying booklet.
• A PPE co-host the workshop dedicated to the movement with a physiotherapist and an occupational therapist, designed and hosted workshops addressing fatigue, suffering and social rights.
• An association representative will welcome you, this program explains the principles of the ETP, promotes the exchange during lunch.
• The organization leader involved with the coordinator to all reflexions, adaptations and evaluation.
• Treatments sheets, brochures and website ("Mieux vivre ma PR") are distributed.
The strong involvement of an association in an ETP adds value but requires human and financial resources. The potential application of the concept of health democracy to other programs should lead to reflexion on the support that the authorities concerned can provide to associations.
Keywords : Therapeutic education, Health democracy, Peer patient educator, Rheumatoid arthritis