For the research overview, a comprehensive literature search was conducted and relevant studies from the period 2006-2016 were evaluated. The report summarises the state of research on health information behaviour (in general and in the event of illness) as well as findings on the dissemination of health information. Both the theoretical models and the empirical findings provide important information on how patients inform themselves and on which communication channels they can be reached with which topics.
Publication: Rossmann, C.; Lampert, C.; Stehr, P.; Grimm, M. (2018): Nutzung und Verbreitung von Gesundheitsinformationen. Ein Literaturüberblick zu theoretischen Ansätzen und empirischen Befunden [Use and Dissemination of Health Information. A Literature Overview on Theoretical Approaches and Empirical Findings]. Gütersloh: Bertelsmann-Stiftung. DOI 10.11586/2017051
The synopsis is supplemented by the qualitative study "The Search for Health Information – Patients’ Perspective and Market Overview" and the quantitative study "The Internet: Your Advisor for Health Issues As Well? Population Survey on the Search for Health Information on the Internet and the Reaction of Doctors". The reports for all sub-projects are available as downloads (pdf) at www.bertelsmann-stiftung.de/patient-mit-wirkung
Summary of the Results
The importance of the Internet in the active search for health information has increased in recent years, but in the average population, it still ranks behind personal conversations with doctors, family and friends and free brochures or mass media. How someone searches for health information varies greatly from person to person and depends not only on personal and socio-demographic characteristics but also on health-related characteristics such as the general health awareness and health competence of the users. In addition, situational factors such as the current state of health, emotions and a perceived information deficit also play a role. The latter may also be related to the doctor-patient relationship, as the situational factors are not only related to the person him/herself, but also to his/her environment and the available interpersonal and media information sources. The available information is judged primarily on its usefulness and credibility. The Internet is often judged to be particularly efficient and offers a wide variety of information. Searches are usually initiated via search engines.
If one looks at health information searches in the case of illness, one can look at either general behaviour or behaviour in relation to specific diseases. In general, people look for information before a visit to the doctor to classify their symptoms and after a visit to the doctor to understand medical terms, obtain further information or to exchange information with other people affected. With regard to the information behaviour for specific diseases, a distinction can be made between common or rare diseases and chronic or acute diseases. As expected, chronically ill persons deal with their disease more intensively and search for health information more often than healthy persons do. However, they often have difficulty finding information, especially from sources that are difficult to access, such as research reports and studies. Accordingly, they want support in finding adequate information and concrete advice on reliable and helpful services. Only a few individual studies on the information behaviour of people affected by rare diseases are available to date. Due to the rarity of rare diseases, there is usually little information or experience available in the social and family environment, which is why those affected often visit online self-help groups.
Health information is made available by a very wide range of different providers, such as media providers, governmental and commercial institutions, health insurance companies and insurers, hospitals, NGOs or foundations, self-help groups and private individuals. It is therefore very difficult to get an overview of the range of health information available. Health information is distributed via a variety of mass media and online-based communication channels. The potentials of these different communication channels differ, among other things, in terms of their reach, target group specificity, depth of information, ascribed credibility and topic-setting potential. In addition to the choice of a suitable medium, the way in which information is presented is also decisive for the achievement of certain communication goals, which can range from the conveyance of information to changes in attitude and behaviour.
When providing information, care should be taken to ensure that risks are adequately presented and that patients can make informed decisions. In addition to the form of presentation, the target group-specific prerequisites and individual abilities of the persons concerned also play a role. It is important to focus on different target groups and to consider their individual prerequisites. "Tailoring" strategies, which tailor information to the individual prerequisites of individual persons, can be computer-based and dynamically adapted.
In the future, the question will arise as to how patients use the Internet to search for health information and what role mobile and social media play in this. In addition, there is a lack of more precise knowledge about the course of individual search episodes and about behaviour during the course of a disease.