Information retrieval for the Cochrane systematic reviews: the case of breast cancer surgery

Introduction. Systematic reviews are fundamental sources of knowledge on the state-ofthe-art interventions for various clinical problems. One of the essential components incarrying out a systematic review is that of developing a comprehensive literature search.Materials and methods. Three Cochrane systematic reviews published in 2012 wereretrieved using the MeSH descriptor breast neoplasms/surgery, and analyzed with respectto the information sources used and the search strategies adopted. In March 2014, anupdate of one of the reviews retrieved was also considered in the study.Results. The number of databases queried for each review ranged between three andseven. All the reviews reported the search strategies adopted, however some only partially.All the reviews explicitly claimed that the searches applied no language restrictionalthough sources such as the free database Lilacs (in Spanish and Portuguese) wasnot consulted.Conclusion. To improve the quality it is necessary to apply standards in carrying outsystematic reviews (as laid down in the MECIR project). To meet these standards concerningliterature searching, professional information retrieval specialist staff should beinvolved. The peer review committee in charge of evaluating the publication of a systematicreview should also include specialists in information retrieval for assessing the qualityof the literature search

Science, institutional archives and open access: an overview and a pilot survey on the Italian cancer research institutions

<p>Abstract</p> <p>Background</p> <p>The Open Archive Initiative (OAI) refers to a movement started around the '90s to guarantee free access to scientific information by removing the barriers to research results, especially those related to the ever increasing journal subscription prices. This new paradigm has reshaped the scholarly communication system and is closely connected to the build up of institutional repositories (IRs) conceived to the benefit of scientists and research bodies as a means to keep possession of their own literary production. The IRs are high-value tools which permit authors to gain visibility by enabling rapid access to scientific material (not only publications) thus increasing impact (citation rate) and permitting a multidimensional assessment of research findings.</p> <p>Methods</p> <p>A survey was conducted in March 2010 to mainly explore the managing system in use for archiving the research finding adopted by the Italian <it>Scientific Institutes for Research, Hospitalization and Health Care </it>(IRCCS) of the oncology area within the Italian National Health Service (Servizio Sanitario Nazionale, SSN). They were asked to respond to a questionnaire intended to collect data about institutional archives, metadata formats and posting of full-text documents. The enquiry concerned also the perceived role of the institutional repository DSpace ISS, built up by the Istituto Superiore di Sanità (ISS) and based on a XML scheme for encoding metadata. Such a repository aims at acting as a unique reference point for the biomedical information produced by the Italian research institutions. An in-depth analysis has also been performed on the collection of information material addressed to patients produced by the institutions surveyed.</p> <p>Results</p> <p>The survey respondents were 6 out of 9. The results reveal the use of different practices and standard among the institutions concerning: the type of documentation collected, the software adopted, the use and format of metadata and the conditions of accessibility to the IRs.</p> <p>Conclusions</p> <p>The Italian <b>r</b>esearch institutions in the field of oncology are moving the first steps towards the philosophy of OA. The main effort should be the implementation of common procedures also in order to connect scientific publications to researchers curricula. In this framework, an important effort is represented by the project of ISS aimed to set a common interface able to allow migration of data from partner institutions to the OA compliant repository DSpace ISS.</p

La fornitura di documenti per i pazienti : collegare a NILDE la rete delle biblioteche per i "consumatori di salute"

No english abstract available.La tradizionale missione dei servizi di fornitura di documenti ? rivolta a soddisfare le richieste di una utenza di ricercatori, medici ed operatori sanitari. Di fatto molti fattori, tra cui anche la diffusione di Internet, hanno ribaltato l\u27"asimmetria informativa" per cui i medici detenevano in maniera esclusiva le informazioni e i pazienti si riducevano ad essere passivi recettori. Da uno studio - citato da G. Eysenbach, JMIR 3(2):e19 - risulta addirittura che il 65% dei medici di base ha ricevuto dai pazienti informazioni aggiuntive. I cosiddetti "consumatori di salute" (health consumers), pazienti e familiari, dispongono di strumenti informativi di qualit? da cui possono raccogliere informazioni sanitarie utili ai fini di valutare i trattamenti di salute. Tale processo ? uno dei tanti che porta al cosiddetto "potenziamento del paziente" (patient empowerment), accrescendone la capacit? di influire sulla scelta dei trattamenti. Gi? prestigiose riviste scientifiche mediche internazionali hanno iniziato da alcuni anni a tradurre per il pubblico gli articoli, fornendo due diverse versioni una per gli operatori ed una per i pazienti. Gli articoli per i pazienti possono essere reperiti nella pi? importante base dati biomedica PUBMED che, per?, pur essendo dotata di un archivio di riviste a testo intero (PUBMED CENTRAL), nella maggior parte dei casi permette il recupero solo della citazione bibliografica e dell\u27abstract, rendendo cos? necessario l\u27utilizzo di sistemi di interscambio per il recupero del documento finale. In Italia, Azalea, Biblioteca digitale in oncologia per malati, familiari e cittadini (www.azaleaweb.it) fornisce, oltre ad altre informazioni, anche riferimenti bibliografici ad articoli utili per i pazienti. Accanto al progetto Azalea ? stato finanziato per il 2006-2007 dal Ministero della Salute il progetto SICOP, Sistema Informativo per la Comunicazione Oncologica ai Pazienti, relativo alla costituzione di una rete di biblioteche per i pazienti in oncologia ed allo studio di un modello di eccellenza per la gestione dell\u27informazione e della comunicazione in tali strutture. Sicuramente questa rete - nata in ambito oncologico, ma che tende ad avere, come Azalea, una diffusione anche verso altre patologie - porter? ad accrescere la domanda di documenti da parte dei pazienti. Ai fini di disporre di dati utili al progetto SICOP si sta avviando un censimento delle biblioteche per i pazienti in Italia, sia di quelle che danno informazioni scientifiche, sia di quelle a carattere ricreativo. Perch?, dunque, non ipotizzare la possibilit? di collegare organicamente a Nilde la rete delle biblioteche per i pazienti, come gi? fatto con le biblioteche di ricerca del Sistema Sanitario Nazionale (progetto Bibliosan)? Ci? permetterebbe di organizzare e gestire al meglio l\u27interscambio dei documenti per i pazienti. Tra le iniziative interessanti di collaborazione con Nilde potrebbe essere, per esempio, l\u27inserimento della tipologia "Biblioteche per i pazienti" accanto alle altre, a fini di accorpamento organizzativo e statistico, e l\u27inclusione dei cataloghi (singoli, o collettivi come Azalea, database strutturato secondo i migliori standards internazionali) nel settore "Cataloghi" di Nilde

E-Oncology and health portals : instructions and standards for the evaluation, production organisation and use

In 2002 the Italian Ministry of Health promoted the institution of a network and a web portal, E-oncology (2), for the seven NHS research institutions specialising in oncology (Istituti di Ricovero e Cura a Carattere Scientifico - IRCCS). One of the aims was to gather and provide information on tumoral pathologies to operators and the public. For an optimum organisation of a health web site it is necessary to uniform the standards internationally approved. The World Wide Web Consortium (W3C) has developed guidelines for accessibility and usability of the sites, implemented in Italy through governmental issues. Many international organisations adopt rules and codes of conduct to validate biomedical information and have organised quality portals such as NLM, OMNI,MEDCIRCLE, HON etc.. Some terminological standards, such as the MESH thesaurus and UMLS, have been produced by the libraries for a correct management and an effective information retrieval, and are currently used by the most important biomedical web sites. The Dublin Core, metadata standard for the integration of information deriving from heterogeneous archives, has also been developed by the libraries. The easy access to information dims the complex architecture necessary for the construction of a web site. The contribution of different professionals is necessary to guarantee the production of quality medical/health web sites, among them librarians have always been involved with the management of knowledge and their skills are extremely valuable. Furthermore, the libraries' network is essential in order to guarantee universal access to health information, mostly still against payment, and to contribute to overcoming the 'digital divide' and 'second-level digital divide

Azalea : effectiveness as a result of interaction between virtual and physical resources

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=

Definizione, recupero e struttura del protocollo clinico : analisi e riflessioni per una condivisione dell'informazione biomedica su Web

Internet has led to new systems of information retrieval and diffusion in all fields, also in medicine. Health workers, patients and citizens can freely have access - on the Net - to useful information resources, like those concerning clinical protocols

Quando un sito è ok! : Guida rapida per orientare pazienti e cittadini alla ricerca dell'informazione sanitaria di qualità sul Web

Guide for patients, their relatives and laypeople describing quality health web sites. It was granted by a MIUR (Italian Ministry for University and Research) project for the spreading of the scientific information. The aim of this tool is to provide the “key” for a good web research and to orient and guide towards health quality information. It describes some of the most important health websites in Italian, English, French and Spanish: Azalea, MedlinePlus, Cencer.gov and Cismef. In the appendix you can find a list with links to some other information resources and a directory of Italian patient libraries