Patients' rights in the NetherlandsBMJ 1994; 309 doi: https://doi.org/10.1136/bmj.309.6953.542a (Published 20 August 1994) Cite this as: BMJ 1994;309:542
- J W W Coebergh,
- D E Grobbee,
- J P Vandenbroucke
EDITOR, - The board of the Netherlands Epidemiological Society, which has 850 members, was surprised to read Tony Sheldon's restrictive interpretation of a proposed Dutch law concerning patients' rights, which has not yet passed the First Chamber in the Netherlands.1 Sheldon reports that the proposed law formed the basis of a document on patients' rights endorsed by 36 European nations after consultation by the World Health Organisation.
The Netherlands Epidemiological Society has collaborated closely with health lawyers, government officials, and politicians to ensure that the new law will permit non-experimental clinical and epidemiological research based on data on patients. We specifically emphasised the rights of future patients, whose treatments should be influenced by results of analyses of data on patients collected systematically in the past. Such research implies adequate access to the data. This is especially true for studies of side effects of treatments and preventive interventions. Sheldon's statement that data on patients for this type of observational research will be made available only after coding by a third party only partially reflects the proposed law. While creating the possibility that coded data can be studied (after the implicit non-refusal of patients) the law does not restrict possession of the key to the code to an independent body. Flexibility is necessary in case data on exposure to disease or on outcomes of disease need verification or interpretation direct from the records. Also, the proposed law does not require that identifiable data or material remain confidential after death.
Finally, all organisations in the Netherlands that have collaborated to arrive at this balanced solution have agreed, with the support of representatives of all political parties in the Chamber of Commons, that possible harmful effects of this law on the quality of health care and research should be monitored. Using this law as the basis for an international patient charter seems premature; the best course for the Department of Health in Britain may indeed be to “wait for the WHO report, then consider it.”