Information available to patients and people wanting advice

Good, reliable information is important if a patient, or someone else wanting advice, is to be able to find their way around health issues. That applies whether the person is looking for a pharmacy, a self-help group, information about illnesses, or about patient rights. What independent information and advice is available? This article offers some examples.

At a glance

  • Reliable information is a crucial basis for being able to make good decisions about health.
  • On the internet there are good, independent sources about a very wide range of health subjects.
  • Some of these sources also offer personal advice or help with finding a doctor.
  • Self-help groups can provide specific answers and enable people to share valuable experiences with one another.
Information services for patients and people seeking advice: woman holding a document in one hand and showing it to another woman sitting opposite. She is holding a ballpoint pen in the other.

An initial overview of the information available

Reputable, sound information is important if a patient, or someone else wanting advice, is to be able to find their way around heath issues – whether they want to make use of specific health services, find out about treatment options, or look for a self-help group.

Legislators and other independent institutions have created many ways of getting information. This overview lists independent information sources for patients and others wanting advice. This overview includes, of course, only a selection of possible points of contact and information sources. Many of these points of contact can also suggest further information sources and contacts.

What is a suitable first point of contact?

People with statutory health insurance are entitled to information from their health insurance provider. This is often a good choice as a first point of contact. The health insurance providers generally not only provide a great deal of useful information online, but also via other channels. These include, for example, face-to-face advice in their offices, telephone hotlines, and brochures on specific subjects. If you want to know what information your health insurance provider can offer, you can just phone them and ask.

A middle-aged woman is reclining in a large chair. She is holding a mobile telephone to her ear with her right hand.

The Associations of Statutory Health Insurance Physicians (Kassenärztliche Vereinigungen) are also legally obliged to provide information to insured persons. Their online offering ranges from explaining illnesses to information on patient rights. For example, these Associations’ websites will help in finding a doctor. Another service: the appointment service centers help arrange appointments with specialists. The Associations’ website provides an initial overview in its service area.

Kassenärztliche Bundesvereinigung website

What does the Independent Patient Advice Service (Unabhängige Patientenberatung Deutschland – UPD) offer?

UPD’s aim is to help patients to find their way around the complex healthcare system.

Any patient looking for advice can also turn to the Independent Patient Advice Service (UPD). This non-profit organization was set up in 2011. The UPD’s aim is to help patients better orientate themselves in the complex health system.

The services offered by the Independent Patient Advice Service (UPD) are aimed at everyone, whether covered by statutory or private health insurance. The UPD can be contacted in a number of different ways, including by telephone, post, email, and online. There are also 30 centers for face-to-face advice in Germany. Advice is offered not only in German, but also in Turkish, Russian, and Arabic.

The UPD’s team of advisers includes, for example, specialist medical teams, specialist doctors, lawyers, and social insurance specialists.

For information about the UPD and all the contact options, go to patientenberatung.de.

Bundeszentrale für gesundheitliche Aufklärung (Federal Center for Health Education)

The Federal Center for Health Education (BZgA) also provides comprehensive information about health and medical issues. It does not only include topics related to health education, but also prevention. There is a broad range, from information about preventing addiction, through subjects such as donating organs and vaccines, to issues relating to women’s and men’s health. 

Bundeszentrale für gesundheitliche Aufklärung website

Where can I find information about specific subjects?

While the health insurance providers, for example, provide information on a wide range of health subjects, specialized online portals provide more detailed information on specific subject areas. Here are some examples: 

Individual health services (IGeL)

On the www.igel-monitor.de online portal you can find out which medical services have to be paid for at the point of care. So this concerns the so-called individual health services (IGeL). The “IGeL-Monitor” assesses the risks and benefits of these services so that patients can make informed decisions. The Medical Review Board of the National Associations of Social Health Insurers (Medizinischer Dienst des Spitzenverbandes Bund der Krankenkassen e. V. – MDS) is behind the IGeL-Monitor. The MDS is funded by the National Association of Statutory Health Insurance Funds (Spitzenverband der Gesetzlichen Krankenversicherung, or in short GKV-Spitzenverband).

igel-monitor.de website

The Cancer Information Service of the German Cancer Research Center (Krebsinformationsdienst des Deutschen Krebsforschungszentrums – KID)

An important point of contact for anyone with questions about cancer is the Cancer Information Service (Krebsinformationsdienst – KID), a body run by the German Cancer Research Center (Deutsches Krebsforschungszentrum). The KID provides comprehensible, academically sound information about cancer. Cancer patients, their families and anyone else interested can go to www.krebsinformationsdienst.de for a wide range of online information. They can also get information, free of charge, about specific issues by phone or email.

Krebsinformationsdienst website

Allergieinformationsdienst (Allergy Information Service)

The Allergy Information Service, which was set up by the Helmholtz Zentrum München with the support of the Federal Ministry of Health, deals with the subject of allergies in general. The online platform provides information about allergy-related illnesses, diagnoses and therapy, and about how you can protect yourself from allergies.

Allergieinformationsdienst website

Diabetesinformationsdienst (Diabetes Information Service)

The national diabetes information portal www.diabinfo.de provides independent, scientifically sound information about diabetes and its prevention. The portal is run jointly by the German Center for Diabetes Research (Deutsches Zentrum für Diabetesforschung) in Munich, the Helmholtz Zentrum München, and the German Diabetes Center (Deutsches Diabetes-Zentrum) in Düsseldorf. The portal provides a broad range of easy-to-understand information, and also offers a simple online test that anyone interested can do to determine their risk of acquiring type 2 diabetes over the next five years. There is also a doctor and therapist finder to help anyone who is searching for one. A platform for clinical studies provides an overview of current diabetes and prevention studies, and it enables anyone interested to register to participate in a clinical study. From late 2020 there will also be experts answering individual queries.

Diabetesinformationsdienst website

Where can I find a pharmacy – including outside normal hours?

The German pharmacists’ health portal (aponet.de) enables you to find a public pharmacy near to you using its “Apothekensuche” search tool. There you can also find the pharmacies that are open outside of normal hours (Notdienstsuche). The pharmacists’ associations also provide relevant information on their websites.

To aponet.de

How can I find reliable mail-order pharmacies?

Older man sitting on a chair with outstretched legs. He is wearing headphones and smiling as he looks at the image on a laptop he is holding in his left hand. The man is touching the screen with the forefinger of his other hand.

Medications are not only available in person from pharmacies, but also via online mail-order pharmacies.

In the EU every country keeps a register of the recognized mail-order pharmacies based in it. Registered mail-order pharmacies show the EU safety logo on their websites. The EU safety logo is intended to help people to identify trustworthy mail-order pharmacies. The EU logo is linked to the national mail-order commerce register in the country concerned, so it enables both domestic and international mail-order pharmacies to be verified.

Check any online supplier carefully before you order medications from them. Do not buy medications from dubious sources!

To the Mail Order Commerce Register

Where can I find a self-help group?

Self-help groups are an important point of contact for many people with illnesses and health issues. Anyone looking for a suitable self-help group can turn to NAKOS. NAKOS is the National Contact and Information Center for Encouraging and Supporting Self-Help Groups. The work done by NAKOS is supported by the Federal Ministry of Health and the statutory health insurance providers. NAKOS has a large online database with addresses of self-help groups, and provides educational brochures, information sheets, and tools.

Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen website

Where can I find information on rare illnesses?

Someone who is affected by a rare illness sometimes finds it difficult to get suitable information. In 2010 the National Action League for People with Rare Diseases (“Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen” – NAMSE) was established to help sufferers and their relatives. Those involved include the Federal Ministry of Health, the Federal Ministry of Education and Research, the “Dachorganisation der Selbsthilfe im Bereich Seltener Erkrankungen e. V.”, or ACHSE for short (Alliance of Chronic Rare Diseases), and 25 other partners.

Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen website

Allianz Chronischer Seltener Erkrankungen website

Besides NAMSE and the umbrella organization ACHSE, the Orphanet website also provides a lot of useful information about rare diseases.

Orphanet website

The care options for people with rare diseases are presented as an interactive map on the se-atlas website and also as a text list on the internet.

se-atlas.de website

You can search for quality-assured information about rare diseases on ZIPSE, the central portal for information on rare diseases. Note that ZIPSE itself does not produce information, but rather refers to existing information providers.

ZIPSE website

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