Tuesday, February 27, 2024, 11:30 a.m
Berlin – Many people have probably already noticed it on the health certificate or other documents: a longer code made up of numbers and letters. But what exactly does this combination actually say? The Health Knowledge Foundation is providing an overview of Rare Disease Day on February 29, 2024.
It is not uncommon for you to be referred to a specialist for further treatment after visiting your family doctor. So that the patient knows which (suspected) illness the patient comes with and can choose the right treatment, there are so-called ICD codes. This means that each diagnosis has a specific code and this is represented by a combination of numbers or numbers and letters. A specific combination then represents an illness, a sign of illness or a group of similar illnesses. This is the code for e.g. B. a proven flu J10, cough is coded with R05. If you want to know what the code on your health certificate means, you can find all ICD codes on the portal of the Federal Institute for Drugs and Medical Devices (BfAM). There is often an additional letter that describes the diagnosis in more detail. For example, a G stands for a confirmed diagnosis, a V for a suspicion. ICD codes are essential for communication between doctors and other providers – perhaps also abroad. These are recorded, among other things, on doctor’s letters and other medical documents.
Rare disease – special code
Rare diseases have not yet been adequately represented in the ICD system. The ICD codes apply primarily to diseases that occur frequently in the population. Rare diseases that do not have their own ICD code are therefore assigned an ICD code from a common disease. For example, it is not always possible to determine from the ICD system which rare disease is referred to or how many people are affected by it. For this reason, the use of so-called ORPHA codes to describe rare diseases more precisely was recommended. However, not all doctors are currently following this recommendation.
Only three percent of doctors know the codes for rare diseases
The Alpha-ID-SE coding system was developed to make the coding of rare diseases easier. It links the ICD codes and ORPHA codes together. Even though the use of the Alpha-ID-SE has been mandatory for hospital treatment since 2023, only around three percent of doctors know this code system. This was the result of a representative study among doctors that the Health Knowledge Foundation conducted in 2023 on rare diseases. The Alpha-ID-SE offers numerous advantages: through its precise description of the disease, it is intended to help it be better represented at all levels of the healthcare system – from the care of those affected to research into the specific rare disease. The Alpha-ID-SE allows conclusions to be drawn about the number of sick people or their needs. For people with a rare disease – whose treatment is often carried out by different specialists – it can be important to know the codes for their own disease. This means that in case of doubt, all relevant information about the disease can be passed on.
About the Health Knowledge Foundation:
The non-profit, operational Health Knowledge Foundation based in Berlin wants to strengthen the competence of people in Germany with regard to health and prevention and reduce the information asymmetries between doctors and patients. To this end, it creates, among other things, health information that is understandable to laypeople based on current scientific findings, shows prevention options and treatment alternatives and promotes health knowledge in general. The founder is the Association of Private Health Insurance.