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PubMed2005

Impact of French 'Comités de Protection des Personnes' on the readability of informed consent documents (ICD) in biomedical research: more information, but not better information.

Information is the keystone to the participation of subjects in biomedical research. Clear comprehension of the informed consent documents (ICDs) is primordial and a necessary requirement is that they are readable. While submission of a protocol to a French 'Comités de Protection des Personnes' (CPP) is a mandatory step with regard to the French legislation on biomedical research, no published data are available concerning its influence on ICDs readability. The aim of our study was to determine the impact of French CPP on the readability of ICDs, using lexico-syntactic readability indexes and ICDs from four clinical research centres and one clinical research unit. Twenty-five ICDs were analysed. The Flesch score was not modified after CPP review, while the Cordial score was significantly lower [from 4 (1-14) to 1 (1-13), P = 0.014]. The information was longer and more complex following CPP review. No protocol characteristics had any impact on the variation before and after review for either the Flesch or the Cordial indexes, nor on the number of syllables per word. Changes in the total number of words before and after review varied considerably between study centre, supporting heterogeneity of CPP review. Since August 2004, French CPP have to study the intelligibility of ICDs in addition to the scientific and ethic aspects of a research. We show that their current reviews do not increase the readability, while increasing the length of ICDs.

France↗
PubMed1998

Applied information quality: a framework for thinking about the quality of specific information.

Information quality, considered abstractly, may seem to be a relatively straightforward matter. Information should be accurate, up to date, useful, and attributable to reputable sources. However, determining the quality of a specific piece of information for a specific use is a more complicated process. The concept of applied information quality is defined in this paper as a judgment of information quality (1) made by a specific person or persons, (2) in a specific situational context for use of that information, and (3) based on the characteristics of the information. Each of the three elements of the judgment influences its outcome. Information judgments are made by individuals in the context of their discipline and community of practice. The situational context includes the specifics of the context for use of the information, the questions that the information must address, the strategy for locating potentially relevant information, and the body of information that is retrieved and is available for judgment and use. The paper focuses on the third element of a judgment of information quality--the characteristics of the information on which the judgment is based. These characteristics are grouped for discussion under six metaquestions: What is the information item of interest? How was the focal information created and when? Who is involved with the focal information? From what perspective was the information created and why? What relationships does the focal information have to other information--its antecedents, sources, and other related information? What approval, review, or other filtering processes, if any, has the information gone through? Approaches to improving quality judgments can focus on improving the information itself, improving the channels that organize and deliver information, or improving the individual's ability to judge the quality of information for a specific purpose. These are not mutually exclusive and, probably, all should be pursued. Applied judgments of information quality are ultimately the responsibility of the individuals using information; they need to be supported in this professional activity as they are in the other responsibilities of their professional practice.

Health Policy↗
PubMed2005

Patients' informational needs and information received do not correspond in hospital.

AIMS AND OBJECTIVES: This study describes and compares the information patients want with the information they receive and examines whether this varies between patients. BACKGROUND: Patient information during hospitalization has received increasing attention. Previous studies, however, have identified problems of inadequate or insufficient information from a patient's point of view. DESIGN: Descriptive, survey design with questionnaires. METHODS: The categorical data were collected by specifically designed questionnaires from adult patients (n = 928) on discharge from one Finnish hospital. The data were analysed statistically using descriptive statistics and non-parametric tests (Mann-Whitney U, Kruskal-Wallis, McNemar and Wilcoxon Signed Ranks tests). RESULTS: Patients attached great importance to information on illness and treatment, and information in this area was provided quite satisfactorily. Less importance was attached to information regarding patient's daily management of illness, such as aftercare, prognosis and patients' rights and less information was reportedly provided. Female gender was systematically associated with attaching greater importance to information and to better evaluations of informational areas. CONCLUSIONS: Patients informational needs and the information received from staff did not correspond. The findings confirm the importance of nurses' roles in assessing patients' informational needs to tailor and provide explicit and relevant information to satisfy patients' informational needs. RELEVANCE TO CLINICAL PRACTICE: More emphasis should be put on developing methods to ascertain patients' informational needs, to evaluate the content of information and to develop tailored information packages for different patients. This can be done by empowering and helping patients to access and understand relevant and appropriate information, for example, by Web-based information systems.

Access to Information↗
PubMed2002

[Well-informed on health matters--how well? The German 'Clearinghouse for Patient Information'--objective, background and methods].

OBJECTIVE: Health information for lay people in print or electronic form are internationally recognised as useful tools and as necessary in the decision-making process of individuals. The effectiveness of offered patient information depends on quality and accessibility. Because much of the available health information is significantly deficient, the Agency for Quality in Medicine developed a programme for assessing the quality of specialised health and medical information for all non-medically trained persons. The German 'Clearinghouse for Patient Information' project is an adjunct to the already established German 'Clearinghouse for Clinical Guidelines'. METHOD: The basis for quality improvement for specialised medical information consists 1. in the determination of demands on quality for patient information published in the German language, 2. development of a standardised instrument for assessing the quality of specialised medical information by non-medically trained persons, 3. establishment of an Internet portal for evaluated and rated material, and 4. the establishment and organisation of relevant partnerships with information providers and users of health and medical information. The principle building block to rate medical information for lay people are the DISCERN criteria for good patient information. The results of the quality rating of specialised medical information are made available to the public with emphasis on promoting transparency of the assessment and rating processes used. RESULTS: The Internet-based patient information service of the Agency for Quality in Medicine (www.patienten-information.de 19.06.02) has currently a selection of approximately 800 information items covering fifty disease topics with fully or partially evaluated and rated information. Partnerships to appropriate information providers and users are already established and have been tested in special single projects. CONCLUSION: To advance the process of quality improvement for medical information for non-medical and lay persons, it is essential to develop and to intensify the cooperation with stake holders and partners at different levels. Only through close cooperation with others it is possible to create a basis to continuously develop and improve the information quality assessment instrument further. In addition, effective strategies need to be developed to disseminate these endeavours to patients and consumers of health information in a user-friendly and transparent way.

Evidence-Based Medicine↗
PubMed1996

The changing face of health information and health information work: a conceptual framework.

The purpose of this paper is to examine the changes in health information and health information work using a conceptual framework and to consider the implication of these changes for health sciences librarians. The notion of what constitutes information depends heavily on the perspective of those defining the term. In the health care domain, numerous established concepts of information exist, many clustering around disciplines and professions. Various information professions-for example, health sciences librarians, information-systems managers, and medical-records administrators--have differing core concepts of information. Although these established concepts of information may seem immutable, they are cultural facts and can and do change. Global networking and changes in health care delivery are just two of many environmental forces that are changing the way the health domain views health information and the way it values the patterns and practices traditionally associated with established types of information and information professions. As new concepts of information arise, the possibility for new expert work surrounding information also arises. Andrew Abbott's systems theory of professions, adapted to the health domain, suggests that some forms of established expert information work may diminish while new types may arise and that both established and new information professions will struggle with each other for official sanction, or jurisdiction, to perform new expert work. This competitive struggle is likely to produce a new balance of information work and roles among the information professions. The specialty areas of library and information science, the heartland of our knowledge base, are as relevant in the electronic environment as in the print environment. Our profession's challenge now is to redefine and communicate our jurisdictional place in the emerging health information environment.

Computer Communication Networks↗
PubMed2003

Written and verbal information versus verbal information only for patients being discharged from acute hospital settings to home.

BACKGROUND: It is becoming commonplace for patients to be discharged earlier from acute hospital settings to their own homes and be required to manage various aspects of their own care. This has increased the need for detailed information to be given to patients and/or significant others to enable them to effectively manage care at home. It has been suggested that providing written health information can assist in this self management. OBJECTIVES: To determine the effectiveness of providing written health information in addition to verbal information for patients and/or significant others being discharged from acute hospital settings to home. SEARCH STRATEGY: Computerised searches from 1990 to June 2002 of the Cochrane Consumers and Communication Review Group Specialised Register and Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (OVID), EMBASE, CINAHL, PsycINFO, ERIC, OVID (including Ageline, EBM Reviews, DARE, Best Evidence, Pre-MEDLINE and PsycARTICLES), Sociological abstracts, Austhealth and bibliographies in articles that met inclusion criteria. SELECTION CRITERIA: Articles were selected if they were randomised control trials or controlled clinical trials; included patients discharged from acute hospital settings to home; the patient and/or significant others received written health information and verbal information in the intervention group, and verbal information only in the control group; and the intervention (written health information and verbal information) was provided at discharge. DATA COLLECTION AND ANALYSIS: Two reviewers independently screened abstracts to determine relevance. Relevant full paper copies were then reviewed against the inclusion criteria. The findings were extracted by one reviewer and confirmed by the other reviewer. The two trials that met the inclusion criteria were too disparate to warrant meta-analysis. MAIN RESULTS: The participants in the two trials were parents of children who were discharged from children's hospitals, one in the United States (n=197) the other in Canada (n=123). Provision of verbal and written health information significantly increased knowledge and satisfaction scores. REVIEWER'S CONCLUSIONS: This review recommends the use of both verbal and written health information when communicating about care issues with patients and/or significant others on discharge from hospital to home. The combination of verbal and written health information enables the provision of standardised care information to patients and/or significant others, which appears to improve knowledge and satisfaction. Many of our objectives could not be addressed in this review due to lack of trials which met the review's inclusion criteria. There is therefore scope for future research to investigate the effects of providing verbal and written health information on readmission rates, recovery time, complication rates, costs of health care, consumers' confidence level, stress and anxiety and adherence to recommended treatment and staff training in the delivery of verbal and written information. In addition there are other factors which impact on the effectiveness of information provided that were not considered in this review but are worthy of a separate systematic review, such as the impact of the patient and/or significant others being involved in the development of the written information, and cultural issues around development and provision of information. Due to concerns about literacy levels for some population groups, other systematic reviews should also focus on other modes of delivery of information besides the written format.

Aftercare↗
PubMed2006

Information needs of the informal carers of women treated for breast cancer.

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.

Adult↗
PubMed2005

Using operational information and information systems to improve in-patient flow in hospitals.

PURPOSE: To consider how information and information systems can be used to support improving patient flow in acute hospitals (a key target for the National Health Service in England), and the potential role of the National Programme for Information Technology currently being developed. DESIGN/METHODOLOGY/APPROACH: The literature plus past and present research, teaching and consulting experience with all levels of the National Health Service is drawn on to consider information provision and requirements. FINDINGS: The National Programme for Information Technology specifies many features designed to support improving patient flows, though timescales for implementation are longer than those for the pledged flow improvements, and operational use of this type of information system has been problematic in the National Health Service. RESEARCH LIMITATIONS/IMPLICATIONS: The work is limited to the National Health Service and information systems in use and planned for it. The National Health Service access targets, flow improvement initiatives and the National Programme for Information Technology apply primarily to England. PRACTICAL IMPLICATIONS: Some bed/flow management information systems currently in use incorporate tools and capabilities in advance of what is outlined in the National Programme for Information Technology, and some rare cases of culture changes in information system use have been achieved. One should learn from these to inform development and implementation of National Programme systems. These existing information systems and approaches may also be useful to hospitals considering systems prior to implementation of the National Programme for Information Technology. ORIGINALITY/VALUE: There has been very little consideration of the use of operational information and information systems for bed/flow management in the literature. Development and implementation of National Programme for Information Technology systems should build from an understanding of the practice and context of bed/flow management.

Acute Disease↗
PubMed2003

Trusted online sources of health information: differences in demographics, health beliefs, and health-information orientation.

BACKGROUND: The recent surge in online health information and consumer use of such information has led to expert speculations and prescriptions about the credibility of health information on the World Wide Web. In spite of the growing concern over online health information sources, existing research reveals a lacuna in the realm of consumer evaluations of trustworthiness of different health information sources on the Internet. OBJECTIVE: This study examines consumer evaluation of sources of health information on the World Wide Web, comparing the demographic, attitudinal, and cognitive differences between individuals that most trust a particular source of information and individuals that do not trust the specific source of health information. Comparisons are made across a variety of sources. METHODS: The Porter Novelli HealthStyles database, collected annually since 1995, is based on the results of nationally-representative postal-mail surveys. In 1999, 2636 respondents provided usable data for the HealthStyles database. Independent sample t tests were conducted to compare the respondents in the realm of demographic, attitudinal, and cognitive variables. RESULTS: The most trusted sources of online health information included the personal doctor, medical university, and federal government. The results demonstrated significant differences in demographic and health-oriented variables when respondents who trusted a particular online source were compared with respondents that did not trust the source, suggesting the need for a segmented approach to research and application. Individuals trusting the local doctor were younger (t2634 = 4.02, P <.001) and held stronger health beliefs (F1 = 5.65, P =.018); individuals trusting the local hospital were less educated (t2634 = 3.83, P <.001), low health information oriented (F1 = 6.41, P =.011), and held weaker health beliefs (F1 = 5.56, P =.018). Respondents with greater trust in health insurance companies as online health information sources were less educated (t2634 = 1.90, P =.05) and less health information oriented (F1 = 4.30, P =.04). Trust in medical universities was positively associated with education (t2634 = 11.83, P <.001), income (t2634 = 10.19, P <.001), and health information orientation (F1 = 10.32, P <.001). Similar results were observed in the realm of federal information credibility, with individuals with greater trust in federal sources being more educated (t2634 = 7.45, P <.001) and health information oriented (F1 = 4.45, P =.04) than their counterparts. CONCLUSIONS: The results suggest systematic differences in the consumer segment based on the different sources of health information trusted by the consumer. While certain sources such as the local hospital and the health insurance company might serve as credible sources of health information for the lower socioeconomic and less health-oriented consumer segment, sources such as medical universities and federal Web sites might serve as trustworthy sources for the higher socioeconomic and more health-oriented groups.

Academic Medical Centers↗
PubMed2003

[What kind of information is expected to be provided by medical information services?].

OBJECTIVE: The improvement of health-related information services is one major issue in reforming the German health care system to provide more transparency in health care services for patients and persons covered by the German statutory health insurance system. To meet the general need for specific medical information a telephone-based health information service may give individual advice and provide a helpful selection of information. The study aims at users expectations and preferences with regard to health information services. More particularly, users perception concerning the type of health information and the ways of choosing the information were to be explored. METHOD: The study included 160 participants of different ages. Prototypical medical advice conversations were presented to the participants consisting of/identifying the consumer's inquiry, followed by the expert's answering sequence. The answers were based on typical inquiries from medical information providers focussing on treatment methods and illnesses. Health information from these conversations with its special contents were ranked by preference judgements resulting in Thurstone scalings. RESULTS: In terms of different health questions, the participants' judgements showed general preference structures for special health information, independent from any personal attitude towards medical information services. Great emphasis was placed on the medical conversation competence of the service provider, which is evident from recognising the specific needs and selection of information of a caller. Overall such health information was preferred that strengthened the patient's and user's autonomy and ability for decision making. CONCLUSION: Patients and persons covered by German statutory health insurance are characterised as users of information by special preferences. Identifying these preferences permits a reasonable selection of information and individual advice. Therefore, these services provide a major advantage over non-interactive health information services (print media, internet sites).

Adult↗
PubMed2000

FORUM: The Information Cycle as a Framework for Defining Information Goals for Water-Quality Monitoring.

/ The necessity to tailor information becomes increasingly urgent as the information revolution continues to generate ever-increasing flows of data and so-called information. From European experiences, a new approach for monitoring system design is suggested in this paper. In this approach, careful and detailed specification of information needs is a major contributing factor to the effectiveness of information products. To develop better specifications for information products, the process of collecting and transforming data into useful information requires careful thought and guidance. A dialogue between information users on one hand and information producers on the other is essential. This dialogue can be based on the information cycle, describing the continuous process from specifying information needs for water management and a strategy to collect information through data collection and data analysis up to utilization of information by water management. By following the respective steps in the information cycle, the process of information gathering can be completed. The cyclic character provides a quantitative means of connecting monitoring system design and operations with the information expectations and/or products required by management.

Journal Article↗
PubMed2004

Are patient information leaflets contributing to informed consent for cataract surgery?

AIM: To assess, against a checklist of specific areas of required information and using standard published criteria, to what extent leaflets given before cataract surgery provided patients with enough information to give adequately informed consent. METHOD: Twelve ophthalmology departments in the West Midlands region were asked to submit the cataract information leaflets given to their patients at the preoperative assessment for analysis. Using criteria published by the General Medical Council, British Medical Association, and Medical Defence Union the leaflets were assessed for their contribution to informed consent for patients considering cataract surgery. Leaflets were scored according to the information they provided on: diagnosis, prognosis, treatment options, costs to the patient, details about the procedure, its purpose, likely benefits, how to prepare for it, what to expect during and after the operation, and the common as well as serious complications that may occur. The readability of the information was also assessed. RESULTS: All the units' leaflets provided information on diagnosis, the lifestyle changes required postoperatively, and cost involved to the patient. Only five units had leaflets that mentioned the risks involved in cataract surgery. The other areas of information were covered by 50-75% of the leaflets. Fifty per cent of the leaflets included a diagram. The average SMOG readability score was high. CONCLUSION: Although present cataract information leaflets make some contribution to the process of informed consent, most do not address important areas outlined by the General Medical Council. Many of the areas of information that are required for informed consent could easily be covered, and should be borne in mind when designing patient information leaflets. Resources are available on the internet including toolkits, guides, and means of assessment for the production of patient information leaflets.

Cataract Extraction↗
PubMed2000

[Development and evaluation of an individuals-oriented information-provision system for outpatients--utility of "drug Usage sheets" and "Drug Information Cards" for patient consultation].

We have implemented an information-provision system for outpatients at the department of pharmacy, University of Tokyo Hospital, in order to comply with the revised Pharmacists' Law by which pharmacists have been obliged to provide patients with information necessary for rational usage of medicine at the time they receive dispensed drugs. This system is linked on-line with the order entry system to print "Drug Usage Sheets" containing important drug information such as therapeutic effects and adverse reactions, as well as photographic color views of drugs. We prepared the sheets by extracting and classifying the original information, and by converting medical terms into lay expressions. Moreover, we developed "Drug Information Cards" to inform each patient of severe side effects and drug interactions, which should affect drug compliance, and implemented an individuals-oriented information system using both the "Drug Usage Sheets" and "Drug Information Cards." In this study, we evaluated the usefulness of this system from the viewpoint of patients' recognition and understanding on necessary drug information. It was indicated from questionnaires to patients that the "Drug Usage Sheets" help most patients understand the names, usage, effects, and general cautions including slight adverse reactions (i.e. grade 1), and that the use of colored letters for important parts and pictograms is a useful method to attract more attention from patients as compared with a conventional method using only letters. Most patients answered that the "Drug Usage Sheets" can be utilized in many ways and valuable in taking drugs with assurance. We formulated the "Drug Information Cards" by information processing: separation of early symptoms of adverse effects into subjective and objective ones and their classification into related organs. Moreover, the brand names of drugs which may cause drug interactions have been listed on the cards so that worsening of adverse reactions and drug interactions can be avoided. Although 14% of the patients answered that they became unsecured when informed on side effects, the percentage of such patients was significantly higher with those who received caution-required drugs for the first time or who have experienced drug side effects before, suggesting the need for combining oral explanation based on each patient's background and understanding on drug adverse effects. In conclusion, an efficient provision of drug information became possible through our integration of necessary drug information in this study, and the individuals-oriented system of drug information was established, which was demonstrated to contribute to the rational usage of medicine.

Drug Information Services↗
PubMed2006

Health information literacy and competencies of information age students: results from the interactive online Research Readiness Self-Assessment (RRSA).

BACKGROUND: In an era of easy access to information, university students who will soon enter health professions need to develop their information competencies. The Research Readiness Self-Assessment (RRSA) is based on the Information Literacy Competency Standards for Higher Education, and it measures proficiency in obtaining health information, evaluating the quality of health information, and understanding plagiarism. OBJECTIVE: This study aimed to measure the proficiency of college-age health information consumers in finding and evaluating electronic health information; to assess their ability to discriminate between peer-reviewed scholarly resources and opinion pieces or sales pitches; and to examine the extent to which they are aware of their level of health information competency. METHODS: An interactive 56-item online assessment, the Research Readiness Self-Assessment (RRSA), was used to measure the health information competencies of university students. We invited 400 students to take part in the study, and 308 participated, giving a response rate of 77%. The RRSA included multiple-choice questions and problem-based exercises. Declarative and procedural knowledge were assessed in three domains: finding health information, evaluating health information, and understanding plagiarism. Actual performance was contrasted with self-reported skill level. Upon answering all questions, students received a results page that summarized their numerical results and displayed individually tailored feedback composed by an experienced librarian. RESULTS: Even though most students (89%) understood that a one-keyword search is likely to return too many documents, few students were able to narrow a search by using multiple search categories simultaneously or by employing Boolean operators. In addition, nearly half of the respondents had trouble discriminating between primary and secondary sources of information as well as between references to journal articles and other published documents. When presented with questionable websites on nonexistent nutritional supplements, only 50% of respondents were able to correctly identify the website with the most trustworthy features. Less than a quarter of study participants reached the correct conclusion that none of the websites made a good case for taking the nutritional supplements. Up to 45% of students were unsure if they needed to provide references for ideas expressed in paraphrased sentences or sentences whose structure they modified. Most respondents (84%) believed that their research skills were good, very good, or excellent. Students' self-perceptions of skill tended to increase with increasing level of education. Self-reported skills were weakly correlated with actual skill level, operationalized as the overall RRSA score (Cronbach alpha = .78 for 56 RRSA items). CONCLUSIONS: While the majority of students think that their research skills are good or excellent, many of them are unable to conduct advanced information searches, judge the trustworthiness of health-related websites and articles, and differentiate between various information sources. Students' self-reports may not be an accurate predictor of their actual health information competencies.

Adult↗
PubMed2003

The relationship between the information-seeking behaviours and information needs of partners of men with prostate cancer: a pilot study.

Although information can have many benefits for individuals with cancer, information-seeking theories suggest that some individuals fail to benefit from voluminous information. Therefore, it is important that the information-seeking behaviours of patients and their families are taken into consideration when identifying their needs for information. This pilot study investigated the relationship between the information-seeking behaviours and information needs of partners of men with prostate cancer. Thirty-nine partners of men with prostate cancer completed the study instruments, which identified their information-seeking behaviours and their information needs. Significant and positive correlations were found between participants' information-seeking behaviours and their information needs, suggesting that as individuals' propensities to seek information increased so too did their needs for information. The results suggest that researchers and healthcare professionals need to take into consideration the information-seeking behaviours of patients and their family members when identifying their information needs.

Adult↗
PubMed2006

Information needs and information sources of individuals living with spinal cord injury.

AIMS AND OBJECTIVES: Access to health information is important for the well-being of people living in the community after spinal cord injury (SCI). In order to design appropriate information interventions, it is critical first to understand the information sources typically used. The goal of this study therefore is to identify the information-seeking practices of this group. SAMPLE AND METHODS: A sample of 207 individuals living in the community following traumatic spinal cord injury were surveyed regarding their ongoing information needs and practices for seeking information. RESULTS: The results reveal that respondents have unmet information needs, despite the fact that they typically access information through a variety of channels. SCI specialists are the most commonly used source, although they are viewed as relatively inaccessible. By contrast, the Internet (used by a relatively high proportion of respondents) is viewed as comparatively accessible, although there are some concerns about the quality of information found there. CONCLUSIONS: These survey results point to the need for an information source that is accessible and delivers high quality information. Although respondents use a variety of information sources, none meets this ideal profile. Information professionals should consider this gap in the design of information interventions.

Adult↗
PubMed2004

[Significance of information for cancer patients and the experience of the German Cancer Information Service in Heidelberg].

Cancer patients have a great need for information. Besides the attending physician as the most valued source of information they use various other sources. The broad avail-ability of information raises the need for "meta-information" for assessment, explanation and integration into the individual context. Here, a telephone information ser-vice meeting high quality standards can of-fer substantial support, combining the advantages of mass media with interpersonal communication. The cancer information ser-vice (KID), established at the German Can-cer Research Center in 1986 with funding by the Federal Ministry of Health, has implemented this concept of health information for the first time on a national basis. The KID provides comprehensive and up-to-date information on all cancer-related issues tailored to individual needs as well as address-es and resources of institutions and organisations of cancer care. Around 40% of KID users are patients. Major concerns are reassurance, assessment and integration of information from other sources, the need for guidance through the health care system and for supportive communication.Tele-phone information can bridge information gaps and deficits and enhance the doctor-patient relationship by building a basis for in-depth discussions. To meet the needs and new information preferences, the KID also publishes brochures and offers information via the Internet and an e-mail service. The KID is integrated in a network of can-cer care resources and, through documentation and evaluation of the calls, contributes to cancer information tailored to the needs of patients.

Electronic Mail↗