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Disagreement about health data

The Health Data Committee recommends the establishment of a national platform for health data, under dissent. Completely wrong focus, believes the head of the Norwegian Association for Medical Genetics.

This article is machine translated by Google from Norwegian

Just before the summer, the Health Data Committee submitted its report to the Ministry of Health and Care Services, where they concluded that Norway should establish a centralized service for Norwegian health data. The idea is that researchers should more easily be able to link health information about each patient from different sources, so that they can work with large combinations of datasets. The data in question is health information that is recorded about us when we visit a doctor and hospital. The committee primarily proposes to link some of the largest registries, which include almost the entire population: the National Register, the Norwegian Patient Register and the Cause of Death Register, as well as socio-economic data from Statistics Norway. In the long term, it is conceivable that the solution will also contain genetic information from hospital tests, and overviews of, for example, abortions, prescriptions and various diseases we have or have had.

Marta Ebbing

Dissent. While the Health Data Committee presented its report in June, the Directorate for e-health's work with the forthcoming Health Analysis Platform was already well underway. Work on the platform, which was initiated on behalf of the ministry, started before the committee was set up last year. A relevant question is therefore whether it was a given that the committee should arrive at the solution that was already being worked on. "No," answers Marta Ebbing, director of health registers at the National Institute of Public Health and chair of the Health Data Committee, to Ny Tid. "We discussed openly, and quickly agreed that we need better legal, organizational and technological arrangements to make health data more readily available for use for all types of purposes. A national health analysis platform will be able to contribute to updated data being opened up for analysis, without raw data having to be copied and sent out to users, as is the case today. This is how we improve both privacy and information security ».

Genome data is sensitive: They can say something about ethnicity, whether parents are close relatives, or whether you have become incest.

Camilla Nervik

However, two of the committee's members, including Camilla Nervik, legal adviser to the Data Inspectorate, have dissented, and believe the working group has not responded to what they were asked for. "The Health Data Committee landed very quickly on the answer being the Health Analysis Platform, and skipped everything that was about easier access to data that has proven difficult to obtain," she says. Nervik believes that the platform itself can be a good solution, but that the consequences for privacy have not been properly evaluated. "These are dealt with very superficially in the report, which only quickly concludes that privacy will be safeguarded."

The Ministry has also received complaints that the patient side has not been represented in the committee, which also applies to the working groups that will put the Health Analysis platform to life. "The Health Data Committee should consider measures to make data access easier for secondary purposes," said State Secretary Frode Hestnes in the Ministry of Health and Care Services. In good Norwegian, this means that the user side is represented by researchers, managers and the health administration – not by the patients.


Journal Information. The Committee has also proposed that information from patients' journals should be obtained without asking the patient themselves, and that research projects no longer need the approval of the Regional Committees for Medical and Health Research Ethics (REK) as at present. Asbjørg Stray-Pedersen, head of the Norwegian Association for Medical Genetics, is critical of these proposals. “When you are admitted to a hospital, you want help, not just that we store and share your data with a third party with no health responsibility. In Norway, we have a great spirit when it comes to contributing to research, but I do not want anyone to be able to use my journal without asking me first. The Health Data Committee's proposal is justified by the fact that it is difficult to conduct research in this country, but in fact it is not. Within my areas of expertise, diagnostics and research go hand in hand, ”she says.

Stray-Pedersen points out that doctors have a duty of confidentiality because health information is sensitive. "Genome data, for example, can say something about ethnicity, whether parents are close relatives, or whether you have become incest," she says. The Medical Association has also expressed concern about the doctor-patient relationship if third parties should be able to retrieve information from the journals. “Without trusting that the information will be treated confidentially, what the doctor may know during the doctor's visit may be incomplete. In the worst case, the patient does not seek medical attention if needed, ”states an input to the Health Data Committee.

For committee leader Ebbing, health research is a social good that depends on many contributing. If you make a reservation, individual needs are trumped for the best interests of the community. "I think this is selfish," Ebbing says.

Reserving oneself, trumps selfish needs for the best interests of society. 

And hype. The Health Data Committee was set up when the government was commissioned by the Storting to investigate how information sharing between biobanks, health registers and industrial players could take place. “Biobanks take care of large quantities of valuable material. Together with the data in Norway's many health registries, they constitute a potent raw material for research, medicine and industry. Biomedicine is a global growth industry, and Norway has advantages that allow us to participate in this growth, ”says Aps Ingvild Kjerkol.

"Completely incorrect prioritization of health care crowns," says Stray-Pedersen, who sees the investment in big data in light of politicians' wishes for a large-scale gene sequencing of Norwegians. "That genetic big data should contribute so much to the individual's health, I think is an air slot. I also don't think this is 'the new oil,' "she says. Stray-Pedersen, on the other hand, calls for a focus on so-called patient-close gene testing. “The next generation of genome sequencing allows you to identify the cause of the disease in up to half of the cases, which is especially important for patients with rare diseases and cancer. Instead of sequencing the entire population of Norway, we should rather discuss how this can be implemented as quickly as possible in the health care system, ”she says.

See also: National DNA register under the radar?

Tori Aarseth
Aarseth is a political scientist and a regular journalist at Ny Tid.

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