Information about Project 2: ELIC

Objectives

• Set up an internet-based European meta-information system on diagnosis and treatment of leukemia as service institution of the network and for support of physicians and patients in all European countries.
• Analysis of requirements for an European Leukemia Information Center
• Development of homepage structure, management and access modalities
• Coordinate, integrate and combine the internet activities of network projects
• Development of information contents for:
• Physicians
• Staff in clinical studies including nurses in oncology
• Leukemia patients and relatives
• Quality control and certification · Information on gender related issues

Description of work

Coordination and integration of the various internet activities within this large European network is a prerequisite for successful presentation towards the public. The methodological approach or the project is mainly based on intensive contacts to study groups, diagnostic laboratories and projects within the network. Therefore experience with communication structures, in depht knowledge on the field and good international contacts in the field of hematology are of utmost importance for the success of the project particularly since the exchange of information is a matter of confidence. Furthermore, research activities will include: regular analysis of various information sources (internet, scientific meetings, publications), strategies for comprehensive, structured presentation of information contents and educational material, development of questionnaires, procedures for quality control and standardization. Whenever applicable standard operation procedures (SOPs) will be formulated and distributed. Technical infrastructure will be provided by the project Information Technology.

General approach:

The basic structure and contents of the homepage will be created based on the existing homepage of the German Leukemia networkAll network projects are contacted for cooperation with the Information Center and communication pathways will be defined. This includes regular exchange of priorities for internet based information and information contents.

• Analysis of requirements for an European Leukemia Information Center
• Analyse available national information resources for physicians/researchers by internet search and questionnaires to network participants and summary in data base
• Define fields of interest of network members by online questionnaires with the topics Information needs, Problems of clinical studies and in addition regular online questionnaires for statistics on website users and website evaluation
• Identify expert groups for specific information contents and create a data base
• Development of homepage structure and access modalities
• Develop a general website structure and working programme priorities based on (1.) with major subdivisions in intranet and internet
• Define access levels with intranet (different sections with separate password protected access e.g. for secret communication within network projects) and internet (freely accessible information and protected specific information for physicians) and define registration modalities (online)
• Define integration of individual websites by other projects, a content management system and sections of the website open to direct changes by network projects
• Development of an information platform for network projects
• Basic structure and first contents on general network information e.g. project description, progress reports, meetings, communication structures for network participants
• Development of network related information contents
• Basic structure and first information contents on:
• Study registry: information on study groups (organisation, contacts, ongoing studies, meetings) and ongoing studies (short protocols, flow sheets, diagnostic procedures)
• Laboratory registry: diagnostic procedures, laboratories, required materials, standard procedures, consensus protocols and results of certification experiments, meetings, educational support and other issues offered by the projects.
• All other information contents provided by network projects
• Specific information for physicians
• Basic structure and internet links as first content· Information letters and information for public
• First information letter and system for e-mail newsletters
• Information letters and information for public
• First information letter and system for e-mail newsletters
• Information for staff in clinical studies and nurses in oncology
• Basic structure and first information contents on legal requirements under consideration of GCP/ICH
• Information for leukemia patients and relatives
• Identification of existing information resources and support groups within different European countries and set-up of communication structures (summary in data base)
• Basic contents with information on relevant leukemic diseases in English and several other European languages. Most important issues are information on clinical studies including novel treatment and information on leukemia subtypes. For frequent questions information sheets which facilitate the answering process and will also be included on the website for download.
• Information on gender related issues
• Researchers: Identify gender related problems of participating researchers in different European countries by anonymous questionnaires which will be created in cooperation with the German organisation for female physicians; results will be analysed and published
• Information exchange: provide a platform e.g. discussion form for information exchange on gender related problems and suggestions and analyse results
• Epidemiology: Information on gender relationships in the incidence of leukemia subtypes and on available outcome data (cooperation with WP 17)
• Physicians/patients: Provide specific information (versions for physicians/patients) on gender related issues such as fertility preservation, leukemia in pregnancy (cooperation with gynaecologists)