Informed Health Online: How our information is produced

1. Expanding knowledge: The starting point

1. Expanding knowledge: The starting point

Our work starts with examining one fundamental question: What do consumers and patients want to know about diseases and other health issues? The foundation of our work is tested and proven health care – what is called evidence-based medicine (EBM) or health care. This is health care that does not rely on personal views and beliefs, but is based on objective scientific evidence.

Medical knowledge is developing constantly. In health care, new therapies are constantly being developed. Hundreds of thousands of patients take part in clinical trials each year. The growth of medical knowledge has become so accelerated that a single person can no longer keep up. Because of this, researchers have already developed a solution to how medical knowledge can be synthesized and made useful: so-called systematic reviews. They are one of the most important instruments of evidence-based health care.

On the Informed Health Online website we would like to make the latest medical knowledge available to everyone. So we have developed a system to help us keep pace with the growing amounts of research knowledge – we call it “evidence scanning”. This is a routine systematic search for current reviews in the most important medical databases. It helps us to remain up-to-date, so that we can react to new and meaningful research results quickly. At the same time, we also stay informed about drug safety warnings issued by American and European authorities.

In our work we focus on the needs of consumers. For example, we evaluate topic suggestions that we receive from our readers and look for evidence that best covers the general population’s information needs. Sometimes we even conduct surveys ourselves. We also speak with self-help groups, patient counseling centers and patient representatives, to find out which topics are especially important to people who are directly affected.

We can also be commissioned by the German Federal Joint Committee (G-BA) or the Federal Ministry of Health (BMG) to create patient information about a particular disease or condition. The G-BA is the highest decision-making body of the German healthcare system, including the health insurance funds, hospitals, community-based doctors, dentists and psychotherapists. We also produce easily understandable summaries of the scientific reports issued by IQWiG (URL: http://www.gesundheitsinformation.de/iqwig-reports.48.en.html)  (Institute for Quality and Efficiency in Health Care), the national institute that publishes this website.

You can find more detailed information about our legislative mandate here (URL: http://www.informedhealthonline.org/iqwig.de) .

2. Evidence: The basis of our information

We strive to be objective, neutral and scientific. In 2008 the World Health Organization (WHO) tested our methods and confirmed the quality of our work. You can find more on this topic on our website (URL: http://www.gesundheitsinformation.de/who-review.644.en.html) .

We also follow the principles of “Good Practice in Health Information” of the German Network for Evidence-based Medicine. You can find more information about these principles at the German Network for Evidence-based Medicine (URL: http://www.ebm-netzwerk.de/grundlagen/images/gpgi.pdf) website.

Our texts are based primarily on systematic reviews. Systematic reviews are summaries of all important single trials that address a specific medical issue. They play an important role in evidence-based health care, because only when all trials are looked at together is it possible to get a clear idea of how much of a benefit a particular treatment has, for example. Individual studies are often too small to be able to provide reliable results on their own. That is why they – when viewed in isolation – can be misleading. You can also read about how systematic reviews are created in our article about the fundamental principles of evidence-based health care (URL: http://www.gesundheitsinformation.de/do-you-know-the-trick-with-the-spoon-in-the-top-of-the-champagne.433.en.html) .

In addition to systematic reviews, we also often look for what are called qualitative studies. This type of study is used to understand the subjective experiences of people who have certain diseases or their families. This type of information is collected in interviews, observations and written documents such as diaries and then evaluated.

To stay up-to-date, we usually include only systematic reviews that looked for trials in the last 3 years. This is important because research knowledge grows rapidly – every year thousands of clinical trials are done worldwide. So today’s knowledge can become obsolete very quickly.

3. Systematic search

When we start on a certain topic, we do a thorough systematic search in different medical databases. This requires a sophisticated approach because health research is scattered throughout thousands of medical journals and databases. Afterwards we select the research that is relevant for the topic. In order not to overlook any important publications, the search results are always checked by at least 2 researchers working independently of each other. Almost all studies and reviews are published in English – regardless of which country they were done in, so the majority of the references in our information are in English. However, we also consider and include research published in German.

We are also interested in research that studies the effect of different forms of health communication. And we search for other freely available patient information on the internet, to get an idea of where there is still a need for high-quality information.

4. Evaluation of evidence

Not every trial is a good trial. That is why it is important to critically evaluate trials in terms of their scientific quality. This is an essential part of every systematic review. Even after an extensive search, there are often only a few trials left that can really provide reliable answers.

And not every systematic review is done properly. For this reason we require that every review meets certain minimal requirements and has only minimal flaws in methodology. This is assessed using a scale – the so-called Oxman and Guyatt index. This index looks at, for instance, whether the reviewers’ search was extensive enough, and whether the trials included were appropriately evaluated. If there are several systematic reviews of suitable quality, a more detailed evaluation of them is carried out in order to identify the best. These reviews are always evaluated by two researchers working independently of each other. If they cannot reach an agreement, a third is consulted.

A further important criterion for us is independence. Because scientific studies show that systematic reviews that are co-sponsored by manufacturers tend to portray their own products in a more positive light, they are not included in our analyses.

We assess qualitative studies to see whether we can be sure they were done well and whether they have adequately addressed the issue being studied.

5. Text production

5.1. Main products

Our main products are basically three different text formats: articles, fact sheets and “research summaries”. They form the heart of the Informed Health Online website.

5.1.1. Comprehensive information packets

Comprehensive information packets describe as many aspects of a disease or condition as possible. They are created for major common diseases or conditions. Comprehensive information packets usually contain a detailed article on the topic and are published as part of a feature. Pictures, graphics, real-life stories and interactive elements help to illustrate the article’s ideas.

5.1.2. Fact sheets

Fact sheets summarize the most important aspects of a disease or another topic. Fact sheets can also have pictures, graphics and patients’ stories to accompany the information in the text.

5.1.3. Research summaries

Research summaries examine a very specific question, for example “Can vitamin C prevent colds?” In these texts we describe research results in more detail.

5.2. Patients' stories

Someone dealing with a particular disease is often interested in what experiences others have had, and how they cope with their condition in daily life. For this reason, we publish stories on our website from people who have agreed to share with others their stories of living with and managing disease. These patients’ stories are gathered during interviews and then published with the consent of the interview partners.

5.3. Interactive elements

Through the use of interactive elements, our readers can test their medical knowledge by taking a quiz, for instance. Other interactive elements aim to help readers do something for their health – for example, there is a calcium calculator that can be used to calculate whether their diet contains enough calcium.

5.4. Graphics and animation

The human body is an incredibly complex organism that has developed over millions of years. Its construction and the processes that go on inside of it are sometimes difficult to understand. To help our readers to better imagine what goes on in their bodies, we supplement our information with graphics and animation.

6. Quality assurance

6.1. Peer Review

To ensure the best possible quality of our information, we involve other experts in our working process:

6.1.1. Internal peer review

In producing our information we draw on the knowledge of the experts working at IQWiG. This means that all information is checked internally prior to publication – by experts working at IQWiG, who include doctors, health-care researchers and scientists, as well as statisticians and experts from the fields of psychology and the social sciences.

6.1.2. External peer review

Before information is published we always ask the authors of the central studies that our information is based on for their assistance. They check the medical and scientific accuracy of our texts. We also have our information checked by independent experts from Germany who have specialized in the respective field.

6.2. User testing

We place special importance on our readers’ needs, interests and questions. To ensure that our information meets their expectations, we have each piece of information tested by users who are often affected by the respective condition themselves. These user tests are performed for us by independent researchers from the Hannover Medical School (MHH) or from the Health University at Jena University Hospital. The feedback is taken right back into the editing of the texts. Of course we will not be able to please each and every reader, but we aim to take as many comments as possible into consideration.

7. Involvement of stakeholders

Prior to publication on our website we give different expert groups the opportunity to submit their comments to the texts within four weeks.

Afterwards the comments are discussed at an editorial meeting, and taken into consideration when the texts are revised. Medical societies, patient representatives, consumer advice centers, dentists, doctors, and psychotherapist associations, church institutions, hospitals and the pharmaceutical industry are all invited to provide comments. We also submit our information for comments to the Independent Patient Counseling Center of Germany (UPD) and institutes like the Robert Koch Institute (RKI).

8. Evaluation

All of the information on our website is checked in different ways. The results of these analyses continuously flow back into the processes of creating and editing the information products.

We also engage in routine monitoring of visits to our website. For example, we find out how many people visit the site, how many pages they access, and whether they make use of the interactive elements. Based on these criteria we can see which topics are most interesting. We also check how often information from the website is taken up by the media.

The website allows readers to submit suggestions for improvement. These might include ideas for improvements in wording or language, or requests for more information on a particular topic. This reader feedback is an important way of helping to make our health information more accessible to patients and users. We also use an online questionnaire to ask about readers’ satisfaction with our website.

Consulting patient representatives and users is a further means of getting feedback. Furthermore, selected health information has been subjected to external testing. Website accessibility has also been tested, because our health information ought to be available to as many people as possible – including people who have physical limitations, like impaired vision.

9. Updates

It is especially important for evidence-based health information to be kept up-to-date. That is why regular updates are an important indicator of quality. Systematic reviews and safety warnings from drug regulation agencies like the U.S. FDA (Food and Drug Administration) that have been identified by using evidence scanning serve as an impulse for us to update our information. In doing this we work with different partners, for example the Centre for Reviews and Dissemination in England, and the Cochrane Collaboration. After that, the evidence is assessed. New research is carefully examined to produce a comprehensive overview of what is known and what is not. Also, when another provider of evidence-based information like guidelines updates, this may give us reason to update our texts as well.

All information that has not already been updated for one of the reasons stated above is usually edited to reflect the latest science within three years. In the IQWiG’s General Methods paper we describe our methods in detail. You can read this on the internet here (URL: https://www.iqwig.de/download/IQWiG_General_methods_V-3-0.pdf) .

10. Literature on our methods

Our methods have also been described in the scientific literature. You can find current specialist publications here:

• Bastian H. Health literacy and patient informati­on: developing the methodology for a national evidence-based health website. Patient Educ Couns 2008; 73(3): 551-556. [PubMed summary (URL: http://www.ncbi.nlm.nih.gov/pubmed/18963722) ]
• Bastian H, Knelangen M, Zschorlich B. Making information available to patients and the general public: The example of "Informed Health Online" from Germany. In: Edwards A, Elwyn G (Ed). Shared Decision-Making in Health Care: Achieving Evidence-Based Patient Choice. Oxford: Oxford University Press 2009: 185-190. [Summary (URL: http://www.oupcanada.com/catalog/9780199546275.html) ]
• Knelangen M, Zschorlich B, Büchter R, Fechtelpeter D, Rhodes T, Bastian H. Online-Umfragen auf Gesundheitsinformation.de: Ermittlung potenzieller Informationsbedürfnisse für evidenzbasierte Gesundheitsinformationen. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 2010; epub March. [Journal summary - in German and English (URL: http://www.sciencedirect.com/science/article/B8JJB-4YX7027-R/2/706253bfd98430a3993b506d3452f17b) ]
• Zschorlich B, Knelangen M, Bastian H. Die Entwicklung von Gesundheitsinformationen unter Beteiligung von Bürgerinnen und Bürgern am Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG). Das Gesundheitswesen 2010; epub November. [Journal summary - in German and English (URL: https://www.thieme-connect.de/ejournals/abstract/gesu/doi/10.1055/s-0030-1261879) ]