PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific‐medical representatives in the health debate

Consumers and patients are increasingly demanding an active role in health-care access and quality, and associations and pressure groups are interacting directly with national health services and with researchers, doctors and scientific or professional societies. This article describes an Italian project aimed at creating a partnership among lay people, patients associations and the scientific/medical community. In Italy, consumers are generally passive recipients of health information from various sources: doctors and health-care professionals, the health system, media, web and parents or peers. This information is often contradictory and non-evidence-based, leading to misunderstandings and confusion. The Di Bella case, the outcry about an alleged new cure for autism, and the increasing number of health awareness campaigns are all clear examples of the lack of an evidence-based culture among Italian consumers and patients associations (see Box 1). To cope with this, lay people must learn how to develop their scientific literacy, becoming familiar with clinical and epidemiological research and acquiring instruments to critically appraise and understand health information. Although these activities are in their infancy in Italy, there are some good examples of empowerment efforts (see Box 2). The number of consumer and patients associations is steadily growing: a survey in 2003 by the Italian National Statistical Institute identified about 21 000 non-profit organizations across the country, a 50% increase compared with a 1997 survey. These organizations cover a wide spectrum of activities corresponding to a broad definition of health, including psychosocial support and direct services, and the findings confirm the deeply rooted Italian tradition of mutual aid in the health-care field. In the last 10 years, consumers and patients associations have extended their interventions from self-help and care to advocacy, including important efforts to convey more information to the public, and organize awareness raising campaigns. In common with other European and American countries, patients federations are emerging in Italy to boost the impact of individual organizations. Some now lobby at local, national and international level, drawing health authorities attention to the need for improvement in a given area. This has led to the introduction of patients charters and the mandatory presence of lay representatives on local ethics committees, yet the medical and scientific community still fails to see patients and consumer groups as partners with equal rights and weight . Consumers, patients and their associations, on the other hand, often lack doi: 10.1111/j.1369-7625.2007.00444.x