[Organization, functioning and expectations of organizations representing patients. Survey of key informants]

To explore patient organizations and their scope in terms of patient and user participation in decisions affecting their health.

Semi-structured questionnaire survey of key informants from 21 patient organizations.

Most of the patient organizations were regional or national private organizations. Their main objectives include improving quality of life and representing the interests of patients and their families, developing information triage and dissemination activities, and providing additional services not offered by the public health service. The main methods of communicating with members were electronic mail, open meetings and forums. Most patient organizations considered health professionals to be the most important group of stakeholders. The sources of funding most frequently quoted were membership fees, public grants and contributions from the pharmaceutical industry. The most important factor for enhancing patient co-responsibility was considered to be involving patients in health care as a way to improve the quality of the heath services. The proposed future scenario that received the most support was the creation of a legal forum in which the patient's voice could be heard and demonstrably taken into account.

Patient organizations can play an important role in providing patients and health professionals with information, promoting self care and improving the effectiveness of health care. These features require visible commitment by the health authorities to facilitate opportunities for patient decisions and choice within the system.