The multi-centre project "Azalea", oncologic digital library for patients, their relatives and the general public, started in 2002, granted by the Alliance Against Cancer (AAC), a network of 7 Italian national cancer research institutes, co-operating in the E-oncology web portal (http://www.e-oncology.it/).
The main aim is to offer a unique repository in order to permit the spreading and accessibility of selected information on cancer, particularly in the Italian language. This information is actually scattered among different sources (booklets, protocols, articles etc.) and various tools (in print, cd rom, Internet etc.). The project has been co-ordinated and managed by biomedical librarians with the co-operation of computer experts, psychologists, doctors, nurses, and patient's associations.
Azalea is the development of the "Italian Oncologic Data Bank for patients and their relatives" on CD ROM, produced by the library of the Centro di Riferimento Oncologico Aviano, which had already produced a library for patients in 1998, a pilot cancer information project.
Actually, Azalea contains about 1000 records, now accessible on the E-Oncology portal as "experimental version" of the open source software CDS-ISIS/UNESCO. Among these: approx. 100 are descriptions of cancer web sites reviewed by an expert, according to an "evaluation scheme" (HON compliant); approx. 400 are records of patient associations; full text articles, booklets, interactive guides and bibliographical citations are also included. Organising the digital library implies the use of international standards such as the Dublin Core metadata and the Mesh thesaurus. Azalea is the first co-operative oncologic project in Italy for a digital library using international standards. The Azalea project also intends to stimulate the formation of libraries for patients through the National Health Service to ensure the orientation and diffusion of tailored information and documentation of general interest.
Good health information strengthens the relationship between patients and and the health care personnel; ensuring effective informed consent and improves the quality of care. The Azalea project has the ambitious target of sharing the knowledge of the specialist with the no-scientific community, it intends to co-operate with international and European projects such as Cismef, Honcode, NLM, Omni, Medcircle etc., in order to confront the difficult task of obtaining and diffusing health information for everyone. |