ICML 9

9º Congreso Mundial de Información en Salud y Bibliotecas

Salvador, Bahia - Brasil, 20 a 23 de septiembre de 2005

BVS4

4a. Reunión de Coordinación Regional de la BVS

19 y 20 de septiembre de 2005

Azalea - an Italian database for oncology patients

Participantes:
  • National Cancer Institute, Oncology Referral Centre, Aviano  - Italy
  • Regina Elena Cancer Institute, Rome  - Italy
  • European Institute of Oncology, Milan  - Italy
  • National Cancer Research Institute (IST), Genoa  - Italy
  • National Cancer Institute, Naples  - Italy
  • National Cancer Institute, Oncology Referral Centre, Aviano  - Italy
  • National Cancer Institute, Oncology Referral Centre, Aviano  - Italy
  • National Cancer Institute, Naples  - Italy
  • National Cancer Research Institute (IST), Genoa  - Italy
  • National Cancer Institute, Milan  - Italy
  • National Cancer Research Institute (IST), Genoa  - Italy
  • National Cancer Institute, Milan  - Italy
  • Regina Elena Cancer Institute, Rome  - Italy
  • National Cancer Institute, Naples  - Italy
  • Regina Elena Cancer Institute, Rome  - Italy
  • National Cancer Institute, Bari  - Italy
  • National Cancer Institute, Oncology Referral Centre, Aviano  - Italy

In the early 1980s the only authoritative source of cancer information for the public was the National Cancer Institute’s Physician Data Query (PDQ). Today there are several:  MedlinePlus (USA, 1998), CancerBacup (UK, 1995), AIMaC (Italian Association for Cancer Patients) with an Italian translation of PDQ  (1997); CISMeF-patients (Catalogue and Index of French-speaking Medical Sites. France, 1997) and now - Azaleaweb(Italy, 2003)
Azalea is a databank of quality cancer information for patients, their families and the public, in the Italian language. The interface is Italian and English. It currently contains just over 3000 records, divisible into:

• Leaflets, information page/s, web sites, articles, books, chapters, conference reports, CD-ROM, DVD, videos etc. There are c.1620 documents aimed at the public, almost all in Italian. More than one third are fully downloadable. The rest may be requested from the libraries participating in the project

• Approximately 500 volunt ary associations plus Italian medico-scientific organisations in oncology (totalling 1381 records, including association branches), which produce material and/or are work with patients and their families.
The two databases – documents and associations – are integrated, as are the libraries that offer services via Azalea, and which have installed Patient Information Points.

Azalea is an Italian collaborative multicentric project, supported by Italy’s Alliance Against Cancer, the network of Italian Oncological Institutes, in Milan (National Tumour Institute and European Institute of Oncology), Rome, Aviano, Genoa, Naples and Bari. Azalea is coordinated by the CRO, Centro di Riferimento Oncologico of Aviano (the most northeastern of the 7 Italian National Cancer Institutes) and the Regina Elena  National Cancer Institute  of Rome. Content is updated and evaluated by a specialist team comprising librarians, information technologists, doctors, psychologists, voluntary workers, nurses and pati ents, drawn not only from the seven institutes but also other centres. Azalea is at www.azaleaweb.it (since April 2004) and on the portal www.e-oncology.it (since July 2003). The second release of a new software designed with CBIM (Consortium for Bioengineering and Medical Informatics of Pavia and CRO Aviano) was launched in April 2004. This enables shared cataloguing of the material among all participating centres and thereby facilitates its accessibility.

Azaleaweb receives approximately 20.000 visits per month.

Synergy between the Library/Patient Information Point and Voluntary Associations; quality evaluation; international evaluation standards; Medical Subject Headings (MeSH) in English and Italian, (translation by the Istituto Superiore di Sanità), UMLS; synonyms and natural language, all these are Azalea’s assets. Azalea aims to reduce the gap that exists between Italy and the rest of Europe vis a vis cancer information provision for patients and their families.