Cadre de coopération avec les associations de patients et d’usagers - Framework for cooperation with associations of patients and users

Posted on May 21 2008 Patients’ organisations: how to contribute to the work of the French National Authority for Health Step 1: The framework was created by a common working group-HAS and patients’ associations.Step 2: The framework was open to public consultation on the HAS website for 5 weeks.Step 3: The framework was validated by the HAS board in May 2008 and published on the HAS website.The framework is based on strong values which create rights and duties for patients’ representatives:To recognize and to increase the value of patients’ expertise whether it is based on personal experience of disease or family or people in contact with someone affected.Consequently, to consider patients’ representatives as experts by providing them the same rights and duties as medical or scientific experts, which means:A right to be paid for their time, and reimbursed of their costs of participation.Prior to participation, an obligation to complete a declaration of potentialconflicts of interests.An obligation to respect confidentiality of documents until publication byHAS. One of the main objectives of the French National Authority for Health (Haute Autorité de Santé, HAS) is transparency. It concerns relationship between HAS and patients’ associations. That’s why HAS has published a methodological guide called “HAS-Patients’ association cooperation framework”. Its function consists of:To describe working rules between associations and HASTo facilitate the associations’ involvement in the work of HASTo guarantee optimal conditions for cooperation Step 1: The framework was created by a common working group-HAS and patients’ associations.Step 2: The framework was open to public consultation on the HAS website for 5 weeks.Step 3: The framework was validated by the HAS board in May 2008 and published on the HAS website.The framework is based on strong values which create rights and duties for patients’ representatives:To recognize and to increase the value of patients’ expertise whether it is based on personal experience of disease or family or people in contact with someone affected.Consequently, to consider patients’ representatives as experts by providing them the same rights and duties as medical or scientific experts, which means:A right to be paid for their time, and reimbursed of their costs of participation.Prior to participation, an obligation to complete a declaration of potentialconflicts of interests.An obligation to respect confidentiality of documents until publication byHAS. One of the main objectives of the French National Authority for Health (Haute Autorité de Santé, HAS) is transparency. It concerns relationship between HAS and patients’ associations. That’s why HAS has published a methodological guide called “HAS-Patients’ association cooperation framework”. Its function consists of:To describe working rules between associations and HASTo facilitate the associations’ involvement in the work of HASTo guarantee optimal conditions for cooperation Posted on May 21 2008