Laudator: Werner Hülsmann, FifF e.V.

The Big Brother Award in the "Health and Social Issues" category is awarded to the

Federal Minister for Health and Social Security

Ms Ulla Schmidt

for the bill for the reform of the national health insurance, which came into force on the 1st of January 2004.

This law is making a fundamental change to the way data is processed at health insurances, leading to massive degradations of patient privacy. Health insurances are no longer accounting health expenses based on anonymous "cases": they now need to be given, in addition to bills from pharmacies and hospitals, those for each individual surgery visit - complete with personal data! Health insurances are thus in effect accumulating full disease profiles for all their members.

The data protection authorities on the national and state level have warned about the following side effects in September 2003:

  • "The new remuneration system is going to involve the processing of invoices for surgery treatments with personal and diagnosis details by health insurances. With the planned reform, health insurances are going to gather comprehensive and intimate information about their 60 million members. The dangerous vision of a "glass patient" is drawing closer. These risks could have been avoided with privacy-friendly technologies such as anonymisation. Unfortunately, such opportunities have been missed completely."
  • "Barring strict restrictions on use, this data could be evaluated by health insurances by all kinds of criteria, e.g. using 'data warehouse' software."

These cautions were thrown to the wind, the health reform bill was passed as drafted by the health minister.

Until now doctors gave their invoices to their representative organisation, the Kassenärztliche Vereinigung (association of statutory health insurance physicians), which passed accumulated costs on to insurances, received insurance payments and distributed these back to the doctors. This system ensured that insurances did not have complete knowledge over individual members' diagnoses and medical costs. This was to prevent insurances from influencing medical decisions on economic grounds, such as "putting off expensive patients". Now insurances receive full treatment and medication data, which they could use to take manipulative action, e.g. delay or refuse payments. The data is encoded using a modified version of the WHO's ICD-10, the International Classification of Diseases. It covers the whole spectrum of medical or psychological diagnoses, regardless of whether these are actually needed for the purpose of billing. This key includes sensitive information about patients' personality or living conditions, such as - among thousands of other labels - whether someone has an "excessive sexual drive" (Code F52.7) or is practicing "fetishistic transvestism" (Code F65.1). There might be circumstances where such items might help a doctor make a professional and comprehensive anamnesis. But they are of no concern to health insurances. By the use of these codes, the doctor's obligation to silence is practically abolished.

Health insurances want to minimise their financial risk. They are therefore interested in as detailed and individual data as they can get, to filter out expensive patients. This "hunger for data" is increasingly endorsed by the health minister, under the misleading label of "modern healthcare". For example, as a part of a "Disease Management" programme she made sure health insurances were given extra documentation about chronically ill patients. Because insurances are having a hard time dealing with those large amounts of data, she has (in breach of the principle of secrecy of social data) allowed data processing to be outsourced to private IT service providers, who might even carry out the processing in another country with lower levels of data protection. The central databases planned by the health minister are supposed to let health insurances assign a "morbidity factor" to members, giving rise to an estimate of the individual cost of future illnesses. This was introduced with the justification that insurances needed to balance their structural risks. But assessing individual health costs is bound to lead to a multi-tier health system. At the same time, insurances have been granted the right to give individual health advice to their members, which until now had been reserved to a separate "medical service".

With this background, the introduction of the electronic health card planned for the beginning of 2006 must be looked upon with extreme scepticism. It has not been decided yet who should be given what kind of access to the data linked to the new card. But there is a danger that patients will in practice be forced to disclose even more data about their health needs, and even if it is against their will. An electronic health card is only acceptable in conjunction with strict data protection rules!

The principle of secrecy of personal medical and social data, which is still valid today, is supposed to give health insurance members assurance that what they discuss with their doctor is confidential and will only be used for the immediate purpose of treatment. With the so-called health modernising bill, the health minister is more and more abandoning this Hippocratic ideal.

Congratulations, health minister, Ms Ulla Schmidt. If you are going to introduce the electronic health card as planned, you can keep the 28th of October 2005 free in your diary. That's when the next Big Brother Awards will be announced.