Are the online available resources sufficiently efficacious to guarantee information on the health of patients and their families? In order to be effective information has to be applied to a process of communication, thereby serving to establish a relationship. Therefore, information and communication have to be ‘demassed’ (Chamberlain 1994), and personalized. But how can this be adapted to electronic systems operating on the Internet? It is necessary to highlight the various factors that reduce effectiveness of information on the Internet: it is often poorly organized, the documents retrieved by search engines are often of little use or poor quality, information/knowledge is not always integrated, even on more structured databases, communicative style of the documents for patients may not be suited to that particular patient in his specific phase of illness. Optimal information may therefore determine or increase the state of anxiety. Last but not least, linguistic barriers are still an obstacle to the use of optimal information and a large part of the population does not use Internet at all (Internet Divide), or uses it in an unsatisfactory way. Azalea comes from a no-virtual project: the first nucleus of its database was the physical and online catalogue of the “Library for patients”, a pilot project founded in 1998 at the Oncological Referral Center (CRO) of Aviano (one of the 7 Italian Scientific Institutes for Research, Hospitalization and Health Care, IRCCS), in order to answer in a qualified way to the information needs of patients, their relatives and friends (mediterranean style). The first data bank of information resources for cancer patients produced by CRO in 2003 constituted the “core” of the new project “Azalea”, extended nationwide when the ACC (Alleanza Contro il Cancro, “Alliance Against Cancer”), a body set up by the Ministry of Health, recognised its national importance and supported it (2003). Coordinated by CRO of Aviano and the Regina Elena Institute of Rome, it’s based on the collaboration of the seven oncological IRCCS (11 institutions at the moment). Azalea’s figures at present: 1470 records of reliable information material, mainly in Italian, nearly 400 full texts, about 1310 Associations and no profit Organizations, mainly authors of the documents. Clinical protocols and institutions directories are planned to be inserted. Nearly 200 records have been systematically validated according to a “well defined” methodology inspiring to international criteria of quality evaluation of Internet information. More than 15,000 users consult the web site www.Azaleaweb.it every month. A team composed by multi-professional specialists, international standards for cataloging and integrating information, active involvement of patients and Voluntary Associations, quality evaluation of material are the key factors of Azalea. The virtual aspect is supported by continuing interaction with the library system for all patients requiring a tailored information support. We are now working to a new project (SICOP): its aim is to create a network, a System, among the “Points of Information and Communication in Oncology (PICO), inspiring (?) to the “Aviano model”, created in different Italian institutions in cooperation with the Voluntary Association and based on the informative support of Azalea and other sources. Thank to this important synergy it is possible to guarantee the efficient diffusion of information related to health care and overcome the limitations of information online. Next aim for Azalea is the enlargement of non-oncology sectors and non-IRCCS organizations: Azaleaplus, the information and communication system for patients and the general public.
The program of the conference 'Cancer on the Internet' is available at: http://www.cancerworld.org/CancerWorld/eventDetail.aspx?id_sito=1&id_stato=1&id=1007&selection=
