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Open Access Highly Accessed Research article

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

Irene Hirschberg1*, Gabriele Seidel2, Daniel Strech1, Hilda Bastian3 and Marie-Luise Dierks2

Author Affiliations

1 CELLS – Centre for Ethics and Law in the Life Sciences/Hannover Medical School, Institute for History, Ethics and Philosophy of Medicine, Carl-Neuberg-Str. 1, 30625 Hannover, Germany

2 Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Carl-Neuberg-Str. 1, 30625 Hannover, Germany

3 U.S. National Center for Biotechnology Information, National Library of Medicine, National Institutes of Health, 8600 Rockville Pike, Bethesda, MD 20894, USA

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BMC Health Services Research 2013, 13:405  doi:10.1186/1472-6963-13-405

Published: 10 October 2013

Abstract

Background

Evidence-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.

Methods

This 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.

Results

Based 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.

Conclusions

Many 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.