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http//:www.partecipasalute.it: a project aimed at empowering
consumers and patients' associations to participate in
health care decisions
Paola Mosconi1([email protected]), 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
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
Project’s aims
Collecting DataSurveys 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 decisionsPartecipasalute websiteTraining for patients associations’ rappresentatives and ethical committee members
CollaborationsOrganizing joint events among patients’ associations and scientific medical organizations
… 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
The website Partecipasalute is intended
mainly for consumers, patients and their
associations …
Partecipasalute databasemore than 2000 articles about “patient involvement”
Mario Negri Institute’s databasesorganized lists of links to websites about specific conditions or diseases
with a brief description (for example: oncocare, paincare)
Cochrane Collaboration reviews database for consumersCochrane reviews’ abstracts and synopses written in plain language
Databases available on the website
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
Evaluating websites and medical information on 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
