Lay people empowerment: the "PartecipaSalute" experience

Article type
Authors
Mosconi P, Colombo C, Liberati A, Satolli R
Abstract
Background: Representatives of voluntary associations often lack critical appraisal skills to participate with an active role in clinical research and healthcare debate. Training courses are required to overcome this lack.

Methods: The Mario Negri Institute - with the Italian Cochrane Centre and Zadig - launched in 2003, supported by a charity foundation, the project "Participate in Health Care" to foster a strategic alliance between patient groups and medical societies towards the goal of better health and shared decision making. During the project a training course was organized for associations' representatives and lay members of ethics committees. The course covered issues required by patients' associations in clinical research or the potential of voluntary organizations. Trainers were researchers, medical practitioners, journalists, activists. A six and twelve month follow up was programmed to find out the outcome of the course on participants' activities.

Results: The course started on October 2005 through six modules dealing with clinical research, conflicts of interest, information, ethics committees, citizens' active participation in the healthcare system. The 24 attendees were divided into working groups on specific topics used to explain the general theme of the day, and then were involved in a formal lesson. Participants' opinions on quality and utility were collected; some of the results are displayed.

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Conclusions: The modules were well accepted by participants, although technical issues were considered very difficult, and more time and practical exercises were unanimously required.