Patients and cancer in the Internet age guided

Patients and cancer in the Internet age: guided pathways to diseases Ivana Truccolo, Gaetana Cognetti, Katia Bianchet, William Russell-Edu and the Azalea. Plus Team Cluj-Napoca, Eahil 2006, September 14 I. Truccolo

Summary 1. Background 2. Azaleaweb: some features 3. Analysis of user access statistics 4. Some international models 5. The development of “guided pathways to diseases” 6. The future: some hints Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 2

BACKGROUND: from the “NEW YORK STATEMENT (2004): USING INFORMATION AND COMMUNICATION TECHNOLOGIES (ICT) AND THE INTERNET TO OPTIMIZE CANCER CONTROL (updated July 2006)” (1) The Internet is the cornerstone of the ICT’s techno-cultural revolution that is starting to transform the nature of cancer control. Patients have been at the forefront of this revolution and many are now regularly using the Internet to obtain information about their disease and its treatment, seek support from on-line patient communities and support groups, share knowledge and experiences with other patients and communicate with their professional carers and loved ones…. I. Truccolo 3 Cluj-Napoca, Eahil 2006, September 14

From the “NEW YORK STATEMENT (2004)… (updated July 2006)” (2) …. . . There is a great deal of confusion and many concerns as to the quality in terms of accuracy, currency and appropriateness of online patient resources; however, it is impossible to police the Internet. Moreover, there is little or no protection for e-consumers of health sites particularly in terms of privacy, security and confidentiality. It is essential that users develop skills to evaluate ICT and the information obtained through them. . . http: //www. cancerworld. org/Cancer. World/module. Static. Page. aspx? id=3250&i d_sito=1&id_stato=1 Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 4

The requirements for a good website, focused on the area of “e-cancer patients”, “Cancer on the Internet Award 2006”, ESO • • • 1. is created and managed with limited resources 2. provides information on cancer and its treatment in an organized, user-friendly manner, respecting users with low-band connectivity, 3. disseminates clear, accurate, useful and updated information about cancer, 4. is used to share knowledge and experience among patients, 5. helps to improve the way cancer patients are treated and/or to avoid poor quality care, 6. provides information that is understandable (by terminology and language) to patients, 7. is preferably multilingual and multicultural, 8. is innovative in its approach. 9. is preferably HON certified http: //www. cancerworld. org/Cancer. World/module. Static. Page. aspx? id=3250&id_sit o=1&id_stato=1 Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 5

In this scenario, Azaleaweb is. . . Azaleaweb is the Italian integrated database offering material on cancer, aimed at patients, their families and the general public: about 3500 records… Bogliolo et al. More information, more choice: an Italian database for oncology patients Ann Oncol. 2005; 16: 1962 -1967 Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 6

Azalea Project Research Group I. Truccolo 1 , G. Cognetti 2 , W. Russell-Edu 3 , A. Bogliolo 4 , A. Codonesu 5 , R. Ricci 1 , P. Seroppi 1 , K. Bianchet 1 , A. Trocino 6 , A. Florita 5 , P. De Cillis 7, R. Montanaro 7, A. Steffan 1 , F. Solero 2 , L. Cecere 2, N. Michilin 1 , M. Montella 6 , F. Cognetti 2 , P. De Paoli**1 and the enlarged Azalea Team 1 Centro di Riferimento Oncologico (CRO), Aviano, Italy 2 Regina Elena Institute (IRE), Rome, Italy 3 European Institute of Oncology (IEO), Milan, Italy 4 National Cancer Research Institute (IST), Genoa, Italy 5 National Cancer Institute (INT), Milan, Italy 6 National Cancer Institute Pascale, Naples, Italy 7 National Cancer Institute, Bari, Italy (**on behalf of all the CRO Staff involved in the Quality Evaluation of the Material) Cluj-Napoca, Eahil I. Truccolo 2006, September 14

A brief overview of the Azalea resources New records alert English interface Clinical trials Search by subject Associations Database Results Document Delivery among libraries Types of documents: print, electronic, websites, etc. . Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 8

Search by text words Quality Evaluation Committee Voluntary Associations Room Search by body part Events Adherence to quality criteria Best Practices Award, 2004 Search by Menu Cluj-Napoca, Eahil 2006, September 14 I. Truccolo Adherence to accessibility 9 requirements

So… where does Azaleaweb come from? It is the result of an Italian multicenter collaborative project, coordinated by the: Centro di Riferimento Oncologico (CRO) Aviano Regina Elena Institute (IRE), Rome Supported by the Alliance Against Cancer (Alleanza Contro il Cancro, ACC), the Italian network of the Oncology Institutes for Research, Hospitalization and Health Care, created in order to share projects, finances and human resources, under the auspices of the Italian Ministry of Health (2002 -2003) Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 10

Behind Azalea: 1. some international models Cancer. Bacup Cancer. gov Medlineplus Caphis CISMe. F Internet Quality Internet resources Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 11

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2. An Italian “real” experience of a Library for Patients and. . . 1. quality validated Behind the virtual library documentation Azalea there is a nonvirtual context: The Patients Library 2. intermediary expert created at the Aviano National Cancer Institute, 1998, for meeting the information needs of Italian cancer patients in 3. an assigned place a tailored way. . . I. Truccolo et al. A pilot project of Cancer Patient Library in Italy: the results of a customer satisfaction survey and its products, Journal of Health Information and Cluj-Napoca, Eahil I. Truccolo 13 Libraries, 2006 in press 2006, September 14

…the physical and electronic archive of the CRO Library for Patients (3) Azalea’s first nucleus: the “Oncologic Data Bank of Literature for patients and common people” (CRO, © 2003) about 900 records Cluj-Napoca, Eahil 2006, September 14 Truccolo I et al . An Italian Oncology Data Bank for patients and common people. EAHIL Newsletter 2002, 2002 (61): 21 I. Truccolo 14

Around Azalea: the network of Patient Libraries (4) üAt present there about 20 Patient Libraries/ Information points in Italy Information services in Italy üSome individual differences and many similarities… Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 15

How an Azaleaweb search works : just a few hints… searching for any topic, e. g “fegato” (“liver”)… Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 16

…one can retrieve information regarding documents, clinical trials, voluntary associations or health care organizations working in that related field Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 17

Full Text document Clinical Trial Full text doc Voluntary Associations Cluj-Napoca, Eahil 2006, September 14 I. Truccolo . . . about liver. . . 18

Despite its complex back office. . . ? Client navigates the Web site Web page Software Development Team - database - WEB languages - li. JAVA language Etc… APPLICATION SERVER Librarians Team Quality Evaluation Staff Cluj-Napoca, Eahil 2006, September 14 WEB SERVER I. Truccolo DATABASE SERVER 19

Cluj-Napoca, Eahil I. Truccolo http: //www. pa. izs. it/eahil_posters_docs/pdfcd/Cognetti-doc. pdf 2006, September 14 20

…Azaleaweb has a simple interface for facilitating information retrieval by those with little or no expertise … You can search by üsimply typing one or more commonly-used terms in the search box ü or choosing a subject from a list üor clicking on a body part üor writing the name of an Association… Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 21

The Voluntary Associations database is not merely a list of descriptive records… It is integrated into the documents database as a result of: üStandardized description (DC) üMESH/NLM subjects üMESH subjects in Italian thanks to the translation by the Istituto Superiore di Sanitá (ISS), Rome Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 22

Azalea supports online information Patients can obtain detailed, up to date and straightforward answers to üThis way you can establish a their questions by: ü mail, telephone/fax or ücoming to the nearest or preferred Library/ Information Point of the Azalea Network üOr coming to the nearest Association Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 23

Azalea in figures, June 2006 ü 1892 records pertaining to informational material ü 614 full text, 229 websites, 89 clinical trials, 822 obtainable by request from holding library üPrint or other kinds of support are available ü The materials available are: books, leaflets, articles, associations, web sites, clinical trials, dvds etc… üThe main language of the material is Italian Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 24

The Azalea Patient Forum, July 2006 4 more Institutions collaborating beyond the 7 initial ones, plus other contacts ü More than 400 documents delivered on request by traditional and electronic mail (since October 2004) ü Total of 19, 000 different Internet visitors per month Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 25

Azaleaweb was classified at number 275 out of 431 sites listed on top 100 italy. com (July 2006) Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 26

Analysis of usage statistics The systematic analysis of usage statistics helps us to improve the database and make it more suited to user needs…. Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 27

The lesson from the statistics user access. . . We realized that it was necessary to make: the search more structured the results less redundant “easy to search” information without requiring users to rephrase a question to obtain the necessary information i. e. A reengineering of the web site was called for! Actually a digital library is a growing organism as well! The metadata and the thorough indexing of the informational materials of Azaleaweb make it easy to achieve the aim These were our proposals in January 2006!!! Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 28

The development of the guided pathways to diseases (1) The guided pathways to diseases were modelled along the lines of several renowned patient information portals: e. g. • Medline. Plus from the National Library of Medicine/National Institute of Health • Cancer. gov, from the National Cancer Institute, USA • Cancerbacup from BACUP, UK • etc. . . Cluj-Napoca, Eahil 2006, September 14 I. Truccolo

These innovative features are designed to make it easier than before for the e-users to conduct a search and, above all, to offer them a clearer display of search results. Improved user-friendliness is all-important, the overall aim being to help the e-patients to orientate themselves 30 Cluj-Napoca, Eahil I. Truccolo 2006, September 14

The development of the guided pathways to diseases: A sample (1) BREAST General Information If you want to Know more… Prevention and Screening Causes, Symptoms and Diagnosis Complementary Medicine Clinical Trials Diet & Food What is a clinical trial Personal Stories, Active Clinical Trials in Italy Children Elderly “WHERE TO SEEK TREATMENT” Hospitals, Health Care Organisatins Glossary Voluntary Associations/Support Groups Cluj-Napoca, Eahil 2006, September 14 I. Truccolo

The development of the guided pathways to diseases (2) Other quality international resources: Information about breast cancer from Cancer. Bacup, Europe's authoritative leading cancer information service for patients Informational material about breast cancer in English and Spanish from the most authoritative database for health consumers, Medline. Plus, National Library of Medicine, USA Informational material in French about breast cancer available through CISMe. F, the authoritative database developed by the University of Rouen Clinical Trials. gov , authoritative international database for physicians and patients about breast Neoplasms Cluj-Napoca, Eahil 2006, September 14 I. Truccolo

Conclusion We spoke about the necessary reengineering of the Italian database of information for cancer patients, previously Azaleaweb. Unfortunately the planned process could not immediately be implemented due to unforeseen reasons (July-August 2006) Nevertheless, the reingeneering of the website is ready for implementation. That is why we decided to make this presentation. . . Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 33

A possible scenario After 3 years, the project is transforming… into a service of Bibliosan The Institutional network of the biomedical libraries of the Italian Institutes for Research, Hospitalization and Health Care supported by the Italian Ministry of Health The Azaleaweb prototype is also available to use for the indexing of non oncological material: in a nutshell, the Azalea. Plus project…or, maybe, an other name! Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 34

Thank you for your attention! Ivana Truccolo Centro di Riferimento Oncologico Library V. Pedemontana Occidentale, 12 Aviano (PN) Italy Tel +39 0434 659248/ fax 0434 659358 itruccolo@cro. it Cluj-Napoca, Eahil 2006, September 14 I. Truccolo 35