Gabriele Seidel

Evidence-based health information from the users' perspective - a qualitative analysis

BackgroundEvidence-based information is a precondition for informed decision-making and participation in health. There are several recommendations and definitions available on the generation and assessment of so called evidence-based health information for patients and consumers (EBHI). They stress the importance of objectively informing people about benefits and harms and any uncertainties in health-related procedures. There are also studies on the comprehensibility, relevance and user-friendliness of these informational materials. But to date there has been little research on the perceptions and cognitive reactions of users or lay people towards EBHI. The aim of our study is to define the spectrum of consumers’ reaction patterns to written EBHI in order to gain a deeper understanding of their comprehension and assumptions, as well as their informational needs and expectations.MethodsThis study is based on an external user evaluation of EBHI produced by the German Institute for Quality and Efficiency in Health Care (IQWiG), commissioned by the IQWiG. The EBHI were examined within guided group discussions, carried out with lay people. The test readers’ first impressions and their appraisal of the informational content, presentation, structure, comprehensibility and effect were gathered. Then a qualitative text analysis of 25 discussion transcripts involving 94 test readers was performed.ResultsBased on the qualitative text analysis a framework for reaction patterns was developed, comprising eight main categories: (i) interest, (ii) satisfaction, (iii) reassurance and trust, (iv) activation, (v) disinterest, (vi) dissatisfaction and disappointment, (vii) anxiety and worry, (viii) doubt.ConclusionsMany lay people are unfamiliar with core characteristics of this special information type. Two particularly critical issues are the description of insufficient evidence and the attendant absence of clear-cut recommendations. Further research is needed to examine strategies to explain the specific character of EBHI so as to minimize unintended or adverse reaction patterns. The presented framework describes the spectrum of users’ reaction patterns to EBHI. It may support existing best practice models for editing EBHI.

Development of a comprehensive list of criteria for evaluating consumer education materials on colorectal cancer screening

BackgroundAppropriate patient information materials may support the consumer’s decision to attend or not to attend colorectal cancer (CRC) screening tests (fecal occult blood test and screening colonoscopy). The aim of this study was to develop a list of criteria to assess whether written health information materials on CRC screening provide balanced, unbiased, quantified, understandable, and evidence-based health information (EBHI) about CRC and CRC screening.MethodsThe list of criteria was developed based on recommendations and assessment tools for health information in the following steps: (1) Systematic literature search in 13 electronic databases (search period: 2000–2010) and completed by an Internet search (2) Extraction of identified criteria (3) Grouping of criteria into categories and domains (4) Compilation of a manual of adequate answers derived from systematic reviews and S3 guidelines (5) Review by external experts (6) Modification (7) Final discussion with external experts.ResultsThirty-one publications on health information tools and recommendations were identified. The final list of criteria includes a total of 230 single criteria in three generic domains (formal issues, presentation and understandability, and neutrality and balance) and one CRC-specific domain. A multi-dimensional rating approach was used whenever appropriate (e.g., rating for the presence, correctness, presentation and level of evidence of information). Free text input was allowed to ensure the transparency of assessment. The answer manual proved to be essential to the rating process. Quantitative analyses can be made depending on the level and dimensions of criteria.ConclusionsThis comprehensive list of criteria clearly has a wider range of evaluation than previous assessment tools. It is not intended as a final quality assessment tool, but as a first step toward thorough evaluation of specific information materials for their adherence to EBHI requirements. This criteria list may also be used to revise leaflets and to develop evidence-based health information on CRC screening. After adjustment for different procedure-specific criteria, the list of criteria can also be applied to other cancer screening procedures.

Communicating the Benefits and Harms of Colorectal Cancer Screening Needed for an Informed Choice: A Systematic Evaluation of Leaflets and Booklets

Objective Evidence-based health information (EBHI) can support informed choice regarding whether or not to attend colorectal cancer (CRC) screening. The present study aimed to assess if German leaflets and booklets appropriately inform consumers on the benefits and harms of CRC screening. Methods A systematic search for print media on CRC screening was performed via email enquiry and internet search. The identified documents were assessed for the presence and correctness of information on benefits and harms by two reviewers independently using a comprehensive list of criteria. Results Many of the 28 leaflets and 13 booklets identified presented unbalanced information on the benefits and harms of CRC screening: one-third did not provide any information on harms. Numeracy information was often lacking. Ten cross-language examples of common misinterpretations or basically false and misleading information were identified. Discussion Most of the CRC screening leaflets and booklets in Germany do not meet current EBHI standards. After the study, the publishers of the information materials were provided feedback, including a discussion of our findings. The results can be used to revise existing information materials or to develop new materials that provide correct, balanced, quantified, understandable and unbiased information on CRC screening.

Participation in disease management of a health insurance company: characteristics and assessment of the process and outcome parameters in the programme

The treatment of diabetes mellitus as a chronic disease depends on patient willingness to adopt changes in lifestyle, nutrition, and therapy self-management. In Germany, treatment is regionally different and partly inadequate. Disease management programmes (DMP) are discussed and implemented in several settings in order to optimise the quality of treatment supply. Accordingly, the Federal Association of Company Health Insurance Funds (BKK) implemented–in co-operation with a call centre–a structured diabetes programme using regular telephone consultations since 2001. The programme is used by 15% of eligible persons. Participant overall satisfaction is high; however, the central variables in the multivariate model were expectations and attitude of participants, which could be influenced by concerted interventions within the scope of the programme. To integrate non-participating insured, it makes sense to consider the specific attitude and requirements of the target group and to take them into account, particularly for information of the potential participants.

Sind Informationsmaterialien zur Darmkrebsfrüherkennung in Deutschland verständlich oder verfehlen sie ihre Wirkung

Evidence-based patient information is an essential part of decision making in health issues. A qualitative study was conducted to examine whether consumers consider the health information on colorectal cancer screening in Germany helpful in supporting their decision making. In this study, eight texts from different German authors about colorectal cancer screening were evaluated with a criteria-based selection. The texts were tested for understandability, structure, design, and effect on readers. Thirteen semi-structured focus groups were formed including 59 higher-educated and 15 lower-educated testers, 46 % of them being male with a mean age of 62.9 years. The transcripts were analyzed by content-analytic assessment. The testers provided detailed comments on the content and design of the texts. They revealed inaccuracies and suggested improvements of the texts. The testers differed from each other in terms of the intensity of their participation in the discussions and comprehension of the material. The reception of the flyers and brochures varied according to the educational level of the testers. Lower-educated testers often skipped passages of texts about risks as well as passages containing numbers and graphics. The texts had different effects on the testers, regardless of the level of education. If adverse effects were presented, some testers became scared while others were reassured because they felt informed. Most of the testers appreciated a call for participation as a central message of the text. Sometimes, if there was no clear appeal to attend the screening, the testers even asked for it. The recently introduced political strategy of promoting an informed choice is applied to an unprepared population who was used to getting a clear yes-or-no recommendation. Thus, at first, the population has to learn how to make an informed choice. This topic must be addressed and taken into account in the process of developing health information. Since this is not always the case, we conclude that current materials are limited in their contribution toward the decision of attending CRC screening.

Participation in a prostate cancer support group and health literacy

To cope with prostate cancer (PC) and its consequences and to be certain about therapeutic alternatives, some patients seek mutual help in prostate cancer support groups (PCSGs), where they share information and find social support. Our study was intended to assess whether group participation is associated with health literacy (HL).

The Hannover Patient University: Advanced Mini-Med School concept and evaluation results

Objective: To determine whether Hannover Medical School’s Patient University, which was developed as the first university-based health education institution in Germany, offers a valuable means of conveying health-related knowledge, competencies and the ability to reflect on health information to its participants. Design: Participatory health education formats included interactive lectures, learning stations and practical training with tutors. Setting: The Patient University was conducted at the facilities of Hannover Medical School, a major German maximum-care hospital and research institution. Methods: To evaluate the programme, data were prospectively collected from participants from 2007 to 2009 using standardised and anonymous questionnaires. One questionnaire included information on sociodemographic data, such as health status, age, gender and post code. A second questionnaire evaluated levels of participant satisfaction, new knowledge and skills gained and understanding of the information provided. Results: Approximately 1,935 participants enrolled in at least one of 60 events from 2007 to 2009. The response rate from the questionnaire collecting sociodemographic data was 61.4%. A total of 35.2% of participants responded to the event evaluation. After matching both questionnaires, 1,188 person-specific data sets were available for analysis. Most respondents were women (74.7%), and the median age was 62 years (range: 16–88 years). Satisfaction with the events was rated very positive (average 1.7 on a scale of 1 = excellent to 6 = poor). Nearly two-thirds of the participants acquired new health-related knowledge and were highly satisfied with the quality of the information received. Participants who self-rated their health status as ‘poor’ tended to be more critical of what they had received than those in good health. Conclusion: We consider the approach a viable health education advance, and future Mini-Med School programmes may benefit from its methodological and evaluative insights. The development of target group-specific information should be the focus of prospective initiatives and related research.

Ethics Literacy and “Ethics University”: Two Intertwined Models for Public Involvement and Empowerment in Bioethics

Background Informing lay citizens about complex health-related issues and their related ethical, legal, and social aspects (ELSA) is one important component of democratic health care/research governance. Public information activities may be especially valuable when they are used in multi-staged processes that also include elements of information and deliberation. Objectives This paper presents a new model for a public involvement activity on ELSA (Ethics University) and evaluation data for a pilot event. Methods The Ethics University is structurally based on the “patient university,” an already established institution in some German medical schools, and the newly developed concept of “ethics literacy.” The concept of “ethics literacy” consists of three levels: information, interaction, and reflection. The pilot project consisted of two series of events (lasting 4 days each). Results The thematic focus of the Ethics University pilot was ELSA of regenerative medicine. In this pilot, the concept of “ethics literacy” could be validated as its components were clearly visible in discussions with participants at the end of the event. The participants reacted favorably to the Ethics University by stating that they felt more educated with regard to the ELSA of regenerative medicine and with regard to their own abilities in normative reasoning on this topic. Conclusion The Ethics University is an innovative model for public involvement and empowerment activities on ELSA theoretically underpinned by a concept for “ethics literacy.” This model deserves further refinement, testing in other ELSA topics and evaluation in outcome research.

Printmedien- und Internetangebote mit Informationen zur Darmkrebsfrüherkennung und ihre kriteriengestützte Bewertung aus Expertensicht@@@Leaflets and websites on colorectal cancer screening and their quality assessment from experts’ views

In Germany, individuals who have statutory health insurance have free access to colorectal cancer (CRC) screening tests, and can choose between a fecal occult blood test and a screening colonoscopy. Evidence-based health information may support informed choices regarding whether or not to undergo CRC screening. The aim of this study was to assess whether the available German information materials on CRC screening meet evidence-based health information standards. A systematic search was made for print media and websites on CRC screening addressed to German people with average CRC risk (search period for print media August 2010, for websites January-March 2012). The identified information was assessed with a newly developed comprehensive list of criteria. In all, 41 print media, including 28 flyers and 13 brochures, and 36 websites were identified and assessed. These materials reported more often the benefits than the risks of CRC screening, and quantified presentations of benefits and risks were less frequently given. Most of the materials called for participation and did not indicate the option to decide whether or not to attend CRC screening. This bias in favor of screening was increased by fear-provoking or downplayed wording. Most materials included false and misleading information. The requirements for evidence-based patient information were currently not met by most of the leaflets and websites in Germany. Feedback was given to the producers of the leaflets including a discussion of the findings. The results may be used to revise existing leaflets or to develop new health information on CRC screening.

[Leaflets and websites on colorectal cancer screening and their quality assessment from experts' views].

In Germany, individuals who have statutory health insurance have free access to colorectal cancer (CRC) screening tests, and can choose between a fecal occult blood test and a screening colonoscopy. Evidence-based health information may support informed choices regarding whether or not to undergo CRC screening. The aim of this study was to assess whether the available German information materials on CRC screening meet evidence-based health information standards. A systematic search was made for print media and websites on CRC screening addressed to German people with average CRC risk (search period for print media August 2010, for websites January-March 2012). The identified information was assessed with a newly developed comprehensive list of criteria. In all, 41 print media, including 28 flyers and 13 brochures, and 36 websites were identified and assessed. These materials reported more often the benefits than the risks of CRC screening, and quantified presentations of benefits and risks were less frequently given. Most of the materials called for participation and did not indicate the option to decide whether or not to attend CRC screening. This bias in favor of screening was increased by fear-provoking or downplayed wording. Most materials included false and misleading information. The requirements for evidence-based patient information were currently not met by most of the leaflets and websites in Germany. Feedback was given to the producers of the leaflets including a discussion of the findings. The results may be used to revise existing leaflets or to develop new health information on CRC screening.