Selbsthilfeforen on the Internet is not always serious

Selbsthilfeforen on the Internet is not always serious

25/01/2012

Self-help groups offer those affected the opportunity to exchange. But not everyone wants direct contact with fellow sufferers. In self-help forums on the Internet, those affected can ask questions anonymously and exchange views. Users should still be careful, because not all self-help offers on the Internet are serious.

Every disease is discussed on the internet
Whether psychological disorder, cancer, heart attack or acne, on the Internet every disease is discussed. There are so-called self-help forums. Although a registration of the users is usually required, however, this can be done under a devised user name, so that the own identity remains anonymous. The Berlin psychologist Jutta Hundertmark-Mayser from the National Contact and Information Center for the Stimulation and Support of Self-Help Groups (Nakos) explains: „The threshold for communicating with other stakeholders is much lower due to anonymity on the Internet than with a traditional self-help group.“ Despite the large offer on the Internet, it is not easy to find a serious self-help forum.

The Berlin health scientist Sebastian Schmidt-Kähler, Managing Director of Independent Patient Counseling Germany adds: „For self-help groups in the classical sense as well as in Internet forums, it is all about the exchange of those affected with each other.“ The primary concern of self-help forums users is usually to learn how they and others handle the challenges of illness. Existential questions about chronic pain or fear of death can be discussed in person on the internet without having to reveal their identity. The expert reports that an exchange among sufferers could also benefit the treatment, because a well-informed patient can also ask his doctor good questions.

How can affected people find a serious self-help forum?
While the Internet offers many opportunities for people to share, it is harder to find well-founded information about alternative treatments or diagnostic procedures. Schmidt-Kaehler explains: „On the Internet, there is no guarantee for the factual accuracy, intelligibility and quality of the information provided.“ The health scientist further reports that there are seals for websites from the medical field. These include seals from the Health Information System (afgis) Action Forum or the Health On the Net Foundation (HON), which are distributed to medical-content websites that constantly update their content, identify advertisements as such, and name the creator of the offer. Schmidt-Kaehler warns: „But such seals can not ensure that the information from the network reflects the current state of knowledge or does not pursue questionable goals.“ Content could be misleading or even wrong. „You just have to know that when looking for advice on the internet“ , explains the expert.

The psychologist and the health scientist agree that those affected should always look for a self-help forum:

- There should be an imprint with a responsible person
- It should be ensured that really affected people discuss with each other
- Forums of pharmaceutical or other companies with commercial interests should be avoided as they often use the websites for advertising purposes

„If, for example, in a discussion forum on overweight only advertising for diet products or the onset of a gastric band is seen, then you should keep your hands off it, "advises psychologist Jutta Hundertmark-Mayser. „And if in the answers of other users again and again of the same drug is mentioned, I should also prefer to search another forum“, she continues. In addition, it should be considered positive if there is a moderator in the forum, the respect for the so-called Nettiquette, the forum rules eighth. The psychologist reports: „The more confidential the topic is, the more important it is that the person concerned and their statements are handled confidentially. And the users themselves should make sure that they choose a pseudonym and that even in the e-mail address their real name does not appear. "

Compare contents of self-help forums
In order to recognize misleading or even fugitive content in self-help forums, it is advisable to compare different contents. „But it is always important to bring together different sources and realize that anyone on the net can become an author“, explains Schmidt-Kähler. Just because something is on the Internet, it does not have to be right for a long time. The expert goes on to say that when buying a car over the internet, you would also be able to compare different offers. „The same applies to everything relating to our health and self-help forums.“

Selbsthilfeforen especially helpful in rare diseases
Schmidt-Kähler explains: „Especially with rare diseases, the Internet can sometimes be the only way for those affected to exchange ideas because they may live far apart.“ In this case, the Internet offers a great advantage over classic self-help groups.

To the rare diseases (engl. „orphan disease“) are, according to the definition of the European Union (EU), diseases that affect less than 2000 people nationwide (Formula 5 of 10,000 people). Due to the comparatively low numbers of those affected, rare diseases in conventional medicine are neglected. Pharmaceutical companies have little interest in researching the field because of the expected low economic benefits. In Germany, about 4 million people suffer from such a disease, across the EU, according to experts, around 36 million affected. In 80 percent of cases, the diseases are provoked by congenital genetic defects. Such genetic dispositions include, for example, cystic fibrosis, vitreous bone disease or progeria (early senescence). These diseases usually occur in early childhood.

Last year, employees of the Chair of Business Informatics at the Friedrich Alexander University in Erlangen-Nürnberg became one „Online platform for rare diseases“ provided to enable patients to share knowledge and experience. Everyone who wants to help those affected can participate in the forum. The Internet platform will also bring together patients, relatives, physicians of various disciplines, psychologists, educators, nurses, scientists and therapists and enable an interdisciplinary exchange. (Ag)

Also read:
PsyWeb: portal for psychological internet tests
Internet portal for physician search and evaluation
Second opinion portal: Doctors warn against remote diagnosis
Self-help forum Hartz IV

Picture: Corinna Dumat