The Internet is a popular source of information, even for health questions. Yet not all of the information that’s available there is accurate and reliable. To offer patients in Germany a reliable source of information, the Institute for Quality and Efficiency in Healthcare (German: Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen), IQWiG in short, has set up a portal that is based on scientific data.
We spoke with Dr. Klaus Koch, Editor-in-Chief of gesundheitsinformation.de, about the contents of the portal and the importance of reliable information on the Internet.
Dr. Koch, who is an informed patient?
Klaus Koch: An informed patient knows the diagnosis and treatment options available to him or her. This patient also knows what advantages and disadvantages these have to choose one of them after a consultation with a physician.
What type of information does the gesundheitsinformation.de portal provide?
Koch: In 2004, the IQWiG – a professionally independent scientific institute funded by a private non-profit foundation – has been legally commissioned to prepare and make understandable and transparent information available. The gesundheitsinformation.de portal was subsequently created where we provide accurate, evidence-based information about diagnosis and treatment options for various diseases. We also aim at imparting knowledge on dealing with the scientific methods.
Where does this information come from?
Koch: All information published on the portal is created by our very own editorial department. The team includes scientists and qualified editorial journalists, who prepare the topics in mixed groups.
After a topic has been determined, we first look into the information patients need and how their disease affects their everyday life. We subsequently search for scientific literature to answer these questions. We primarily base statements on diagnosis and treatment options on summaries of first-rate, comparative studies, so that our statements reliably reflect current knowledge.Prior to the first publication, we send our texts to panels such as the IQWiG advisory committee, which consists of 30 representatives such as patients, medical associations and pharmaceutical companies for example. They have the opportunity to read the article and comment on it. We subsequently review the comments in our editorial department and decide which suggestions we adopt.
Do patients also have the chance to comment on the portal contents?
Koch: Patients are already included in the development of our texts: we regularly conduct user tests where test readers rate our texts and state what they think needs improvements. We subsequently check how we revise the texts.
In addition, all portal users have the chance to reach us via our contact form. We review all feedback and respond if necessary.
However, our editorial department doesn’t provide any medical advice. We ask our readers to consult a physician for these types of questions.
What criteria do you use to choose your main topics?
Koch: Our legal obligation requires us to look into diseases of “significant epidemiological importance“. We therefore primarily work on the most frequent diseases. We take our cue from the frequency of diagnoses in Germany. Our goal is to provide information on the 200 most common types of diseases at gesundheitsinformation.de.
How many diseases do you introduce every year on the portal?
Koch: We need approximately six months to prepare for a topic. Since we update our existing texts on a regular basis, we currently have 50 to 60 topics per year that we either publish new or update. Every two weeks we send out an email newsletter and post our latest publications and updates to the newsletter dates.
How important is it for patients to be able to get reliable information from the Internet?
Koch: For many, the Internet has become a common and important source of information. The information quality varies greatly however. Bad and good quality information can only be one click away. Oftentimes it isn’t easy to determine whether information is reliable or not. You should pay attention for instance to who operates the respective website, what qualifications the authors have and whether they cite sources. You should generally be skeptical, if you don’t know who the source of the information is. Alarm bells should go off in your head when there are only benefits listed for a diagnosis or treatment method or if in fact a website promises a cure. That is actually always dubious.