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Abstract
Background: PartecipaSalute Participate in Health Care is a project on citizens and patients involvement in healthcare developed by the Mario Negri Institute, Italian Cochrane Centre, Zadig editorial company since 2003 supported by a bank foundation. Within its activities, the PartecipaSalute project annually helds a course aimed at training patients associations and lay members of ethics committees on clinical research and healthcare decision-making. Objectives: To describe a training programme for consumers and to evaluate the impact on participants knowledge and satisfaction. Methods: Knowledge is evaluated through a 13-item questionnaire on clinical research issues submitted before and after the course and a self assessed form on the topic covered by each module. Satisfaction is evaluated using a form on quality, performance, relevance of each speaker (4 items) and an overall survey both self administered. A discussion with participants about the organization, methods and contents is organized during the course. Report of participants future activities tied to the topics of the course are solicited. Results: One hundred fifteen patients representatives attended to the courses (2007 2010). The educational modules cover basic concepts of clinical research, conflict of interests, uncertainty in medicine, strategies of health information, ethic committees, credibility of patients associations. Each module begins with workshops that discuss a relevant practical example. The number of correct answers to the 13-item questionnaire increased after the course (2007: 56 69%, 2008: 70 83%; 2010: 53 66%). The mean value of the self assessed knowledge increased after the course. Data on the satisfaction of participants are available. Conclusions: We observed a knowledge gain, an increased satisfaction, and a more enthusiastic involvement in the courses participants. After the course, most participants accepted to join PartecipaSalute working groups. A controlled evaluation of the course s impact on attitudes, behaviors and activities developed by participants is needed.