Supported by Compagnia di San Paolo, Torino

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Presentation transcript:

Supported by Compagnia di San Paolo, Torino http//:www.partecipasalute.it: a project aimed at empowering consumers and patients' associations to participate in health care decisions Paola Mosconi1(mosconi@marionergi.it), Isabella Bordogna1, Luca Carra2, Cinzia Colombo1, Vanna Pistotti1, Alessandro Liberati3 1Istituto di Ricerche Farmacologiche Mario Negri-Milan; 2Agenzia di Giornalismo Scientifico Zadig-Milan; 3Centro Cochrane Italiano-Milan, and 4University of Modena and Reggio Emilia-Modena Supported by Compagnia di San Paolo, Torino

Project’s aims to raise public awareness on health care-related issues and to empower consumers to enable patients, consumers and their associations to have an active participation in healthcare decisions to provide them the tools necessary to critically evaluate health information

Collecting Data Surveys on patients’ associations: training, interaction with patients (medical information, support, counselling) Interactions among patients associations and scientific medical organizations Empowerment, how we can help patients be critically informed and make health care decisions Partecipasalute website Training for patients associations’ rappresentatives and ethical committee members Collaborations Organizing joint events among patients’ associations and scientific medical organizations

The website Partecipasalute is intended mainly for consumers, patients and their associations … … in order to: critically appraise health information; know their rights and play an active role in the NHS; have an active participation in healthcare decisions; know benefits and limits of clinical research and collaborate with the medical-scientific community

Databases available on the website Partecipasalute database more than 2000 articles about “patient involvement” Mario Negri Institute’s databases organized lists of links to websites about specific conditions or diseases with a brief description (for example: oncocare, paincare) Cochrane Collaboration reviews database for consumers Cochrane reviews’ abstracts and synopses written in plain language

Evaluating websites and medical information on the media Available on the Partecipasalute website are an evaluation grid with a 10 points checklist in order to analyse medical websites an evaluation grid to analyse medical information in the media

A training course for patients associations’ rappresentatives and for ethical committes members starts on October 2006 It deals with the methodological aspects of research, patients’ partecipation in clinical trials, how to critically appraise health information, ethical committes