The website gesundheitsinformation.de / informedhealth.org focuses primarily on the presentation of topics relating to health and illness. One topic may comprise different types of articles and information formats. These different formats are intended to cover the main aspects of a topic and answer central questions users may have. They are also intended to meet the different information needs of different audiences.
The main types of articles include the following:
Overview: The overview introduces the topic and provides background information and links to the types of articles (described below) that further explore the topic. The overview has a fixed structure.
Learn more: This format provides further information on more specific aspects of the topic, such as treatment options with or without medication, or certain diagnostic tests. If possible, a “Learn More” will also describe the advantages and disadvantages of
individual treatment options or, if there is not enough good evidence, the resulting uncertainties. A “Learn More” may also offer insights into aspects of living or coping with a particular health problem. The article will then attempt to take into account both the perspective of the person directly affected by the illness and that of family members or other people who are close to them. “Learn more” articles may be supplemented by illustrations or multimedia content.
Research summaries: These articles are objective summaries of the current knowledge about the question posed in the title. As a rule, they are based on the results of good-quality, systematic evidence syntheses. They provide in-depth descriptions of the studies and explain how the answer to the research question was found.
7.15.1 Supplementary formats
The main formats can be supplemented by additional formats, e.g. to expand on individual aspects of a topic or to try to present certain information in a different way. For example, using images, sound and animated films may increase the attractiveness and understandability of the website, especially for people with lower literacy levels.
The supplementary formats include the following:
real-life stories of people affected by the medical condition (see Section 7.15.2 for more information),
illustrations, photos and other images,
animated films with text and sound,
quizzes,
glossary,
“In brief“: general articles explaining anatomy, bodily functions, treatment approaches and diagnostic measures, as well as the principles and methods of evidence-based medicine,
calculators.
The goals of these supplementary items include the following:
promote general understanding of health and medical issues
help users to understand and weigh up the potential benefits and harms of medical interventions
facilitate self-management strategies
As a rule, interactive items are also subjected to external testing by users.
7.15.2 Real-life stories
The real-life stories represent one means of conveying scientific evidence and making it accessible to the general public [265]. The importance of real-life stories in medical practice and in health care is increasingly recognized [272,623,703]. Many patients would like to hear or read about the experiences of people affected by the same health condition as them [315,635].
The essential part of a real-life story is to show how an individual experiences and deals with their situation. Real-life stories provide the following [635]:
They offer people the opportunity to compare their own experiences with those of others.
Reading about the feelings of others might “allow” acceptance of similar emotions.
They can show people who are affected by the medical condition that they are not alone.
By presenting the individual stories of patients as well as those close to them, the Institute makes it possible for patients and other interested people to find out about the different aspects of living with a condition and nursing care. This is intended as a complementary source of health information, in addition to the other products.
Some people may see the real-life stories as a recommendation to make similar decisions.
This effect may be in conflict with the aim of creating neutral information. For the real-life stories published on gesundheitsinformation.de / informedhealth.org to first and foremost offer insights into how people experience a medical condition and cope with its effects, the articles are edited to ensure that they
do not contain any passages that contradict the statements on the scientific evidence contained in the other articles,
do not make any explicit recommendations, and
only mention options that are commonly used.
Real-life stories are put together as follows:
Interview partners are found, most often via self-help organisations, patient universities and doctor’s offices.
Written informed consent is sought regarding the interview procedure and how the interview will be used.
The interview is conducted (usually by telephone).
The interviews are documented and edited, and the interview partners give their informed consent for the publication of the final version.
Publication on the website.
The editing of the interviews includes the transcription of the audio material into German and the reduction of the content to an amount that is suitable for the Internet. The contents are shortened and summarised on the basis of predefined areas of focus, especially in the areas of living with the condition, experiencing the symptoms, and coping with the diagnosis, course and effects of the disease. This process is carried out in close cooperation with the interview partners.
The methods used to record, edit and publish the real-life stories are guided by the established methods followed by the creators of the Database of Individual Patient Experience (DIPEx) [168].
The decision on whether to include real-life stories in the information on a particular topic is based on various criteria, including the following:
the possible effects of the illness on patients’ lives in terms of physical, emotional and social aspects,
the possible duration of the medical condition and the likelihood of it becoming chronic,
the extent to which aspects of the illness are taboo in society, which may make talking about them in a social environment difficult (such as mental illness or conditions affecting the genitals).
7.15.3 Website
The main tool for the dissemination of the health information is the bilingual website www.gesundheitsinformation.de / www.informedhealth.org. High website standards are to be maintained in the following areas:
usability and accessibility [342,407,487]
privacy and data protection [347]
transparency
search engine visibility [648]
attractiveness to users
The website includes a free electronic newsletter, with the choice of a fortnightly or monthly subscription. The newsletter contains information on what is new on the website, including when information is updated. The content of the website is also available in Atom and RSS formats, and can be read using the customary readers. In addition, website content can be automatically integrated into other suitable websites through an iFrame or XML interface.
The Institute’s website is certified by the “Health On the Net” (HON) Foundation, fulfilling the 8 requirements of the HON Code of Conduct (HONcode) for medical and health-related websites. It also complies with the principles of good practice in the development of health information defined by the German Good Practice Health Information36 [164].