Mosconi Paola, Colombo Cinzia
Laboratory for Medical Research and Consumer Involvement, Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
J Ambul Care Manage. 2010 Jul-Sep;33(3):223-30. doi: 10.1097/JAC.0b013e3181e5eb4e.
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.
医学研究与消费者参与实验室于2005年在马里奥·内格里研究所成立，该研究所是一家非营利性药理研究机构，成立的原因是人们越来越关注促进公民和患者参与医疗保健辩论。它与患者协会、研究人员和临床医生开展了多个项目。其目标是促进医疗保健专业人员、患者及其组织之间的战略联盟，开展不同参与程度的活动。在该实验室的活动中，“参与健康”项目为消费者组织了培训课程，发布了一个传播循证信息和批判性评估工具的网站，并收集了患者设定的研究重点。组织了两次共识会议，一次涉及脑损伤患者的援助，另一次涉及激素疗法和更年期。还评估了不同来源（新闻文章、网站和宣传册）所涵盖的健康信息质量。2006年至2008年有70名消费者参加了培训课程，2008年1月至2009年6月，“参与健康”网站每月平均有30500次独立访问。在关于激素替代疗法的共识会议“告知女性”中，确定最终建议的14人专家小组中有7名非专业人士。本文给出了该实验室主要活动的其他数据。选择患者及其组织的标准、参与方法以及活动影响评估仍是未解决的问题。我们目前正在开发评估活动的方法，并试图促进公民和患者参与有关医疗保健援助和研究的决策环境。
