Text: Kaisa Järvelä

Health Science Data Often Suited to be Archived at FSD

The Finnish Social Sciences Data Archive (FSD) expands its scope to archiving health data. All FSD services are already available to health scientists free of charge. The Data Service Portal Aila contains approximately 200 health science datasets. Health Research Specialist Annaleena Okuloff has been working in the FSD since the beginning of 2015. Based on her work, FSD has taken part in creating national best practices for archiving and reuse of health data in Finland.

What sort of health data are suitable for the FSD, Health Research Specialist Annaleena Okuloff?

–All the data archived at FSD must be in digital format. For example, survey data, results of blood tests, transcribed interview data, and diagnoses based on X-ray images are well suited for archiving.

–Currently, most archived health datasets are survey data. They focus on healthcare or, for example, employee health and work ability. For now, data from medical sciences play a smaller role.

–All data containing sensitive personal data must be anonymised before we can archive them and give access to re-users of data. The current interpretation of the Data Protection Ombudsman is that sensitive data cannot be archived with identifiers, even with the research participants' consent.

How are archived data processed at the FSD?

–The FSD produces study descriptions of archived data both in Finnish and in English. In addition, we process the data for long-term preservation.

–The data archive hopes that researchers would anonymise their data as far as possible. However, we will always review the anonymisation and, if necessary, finalize the work in a way that all the data we archive are fully anonymous.

–If the data we receive have been fully anonymised, the research group providing the data can preserve the original data and the key to the code if they are necessary in the future, for example, for continuing a longitudinal study.

Who has access to data archived at FSD?

–Researchers can determine the access conditions to their data from the alternatives offered by the FSD. In the strictest case, the FSD allows data access only by a special permission from the researcher. The data can also be opened for research purposes only, or alternatively for research, studying, and teaching purposes.

–If need be, a period of embargo can be implemented. The embargo period means that access will be given to other researchers, for example, only after the original researcher has finished their own work.

What kind of data are not suitable for the FSD?

–We can't archive large files, such as videos, or fMRI, X-ray or MRI images, at least for now. Some international archives can be used for storing fMRI data.

–We do not accept biological data, such as blood, DNA, or tissue samples because in Finland these are stored in biobanks.

–We can't accept data based on register data because even the researchers themselves only have access rights to this type of data. Furthermore, the archiving would be rather pointless because register data have already been preserved elsewhere.

–We have, however, accepted survey data including some variables taken from registers. In these cases, the register data have most often consisted of background variables, such as the sosio-economic status, age, or educational institute of the respondent.

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