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Patient organisations (Patientenverbände) in Germany: how they influence laws
Not just associations – but an official voice for patients within the healthcare system
What are patient organisations?
Patient organisations are non-profit bodies that represent the interests of patients in Germany – including people with chronic illnesses, disabilities and all regular users of the healthcare system.
They include, for example:
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large nationwide associations such as
Deutsche Patientenliga, Deutsche Krebshilfe, Deutscher Behindertenrat -
disease-specific organisations such as
DiabetesDE, Deutsche Herzstiftung and others
Core roles of patient organisations
| Role | How it is carried out |
|---|---|
| Political representation of patients | Participation in official committees such as the Federal Joint Committee (Gemeinsamer Bundesausschuss – G-BA) to shape health policies |
| Influencing legislation | Submitting formal statements and proposals when new health laws are drafted or existing ones are amended |
| Monitoring health insurers | Observing complaints, criticising malpractice and defending patients’ rights vis-à-vis supervisory authorities |
| Information and health education | Publishing guides, brochures and online resources, and organising workshops and awareness campaigns |
| Individual support | Advising patients who have suffered from medical errors, treatment denial or unfair decisions by insurers or authorities |
| Data collection | Conducting surveys and reports that document patients’ real-life situation and are used as a basis for political advocacy |
What impact do they have inside the system?
Within the Federal Joint Committee (G-BA) – which decides, among other things:
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which services are covered by statutory health insurance
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which treatment guidelines and standards apply
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which preventive check-ups are offered routinely and free of charge
patient representatives have a right to participate in deliberations (Mitberatungsrecht). This means their vote is not decisive in the final ballot, but their voice is heard officially, recorded and taken into account when decisions are made.
Examples of past achievements
| Achievement | Driven mainly by |
|---|---|
| Inclusion of modern cancer therapies in the statutory benefit catalogue | Pressure and expertise from cancer patient organisations |
| Introduction of the legal right to a “second medical opinion” | Campaigns and lobbying by patient organisations in the G-BA |
| Changes in organ transplantation criteria and prioritisation | Reports and submissions from organisations representing patients with chronic illnesses |
How can refugees and migrants benefit?
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Many organisations offer free or low-cost memberships.
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You can contact them if, for example:
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you feel unfairly treated by a doctor or hospital
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a necessary treatment has been refused
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you need formal support in dealing with a public authority or health insurer
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Summary: what do patient organisations actually do?
| Question | Answer |
|---|---|
| Do patient organisations have legal power? | They have participatory rights in key decision-making bodies such as the G-BA |
| Do they help individual patients? | Yes, they provide counselling and individual support in many cases |
| Do they really change laws and policies? | Yes, they play an active role in shaping healthcare policy and expanding benefits |
| Can I contact them as a migrant or refugee? | Yes, and some offer information or counselling in several languages or with interpreters |
The editorial team of the website aims to provide accurate information based on extensive research and multiple sources. Nevertheless, errors, gaps or legal changes are always possible. Please treat the contents of this article as an initial orientation only, and always seek up-to-date, binding information from official bodies, patient organisations and competent authorities.
