1. Supported by Compagnia di San Paolo, Torino
http//: a project aimed at empowering consumers and patients' associations to participate in health care decisions Paola 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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