Fostering a strategic alliance between patients' associations and health care professionals

The Laboratory for Medical Research and Consumer Involvement was established in 2005 at Mario Negri Institute, a nonprofit institute for pharmacological research, as a consequence of the increasing interest in boosting citizens' and patients' involvement in the health care debate. It has developed several projects with patients' associations, researchers, and clinicians. Its objectives are to foster a strategic alliance among health care professionals, patients, and their organizations, developing activities with different levels of involvement. Among the laboratory' s activities, the PartecipaSalute project has organized training courses for consumers, published a Web site disseminating evidence-based information and critical appraisal tools, and collected research priorities set by patients. Two consensus conferences have been organized, one dealing with brain injury patients' assistance and the other with hormone therapy and menopause. The quality of health information covered by different sources (press articles, Web sites, and brochures) has also been assessed. Seventy consumers attended the training courses from 2006 to 2008, and between January 2008 and June 2009 the PartecipaSalute Web site registered a mean of 30 500 single visits monthly. At the consensus conference Informing women on hormone replacement therapy, 7 members of the 14-member panel defining the final recommendations were lay people. Other data from the laboratory's main activities are given in this article. The criteria for selecting patients and their organizations, the methods of involvement, and evaluation of the impact of the activities are still open questions. We are now developing ways of evaluating our activities, and trying to boost citizens' and patients' participation in decisional settings, concerning health care assistance and research studies.