Project deliverable Open Access

D5.2 Data access protocol for DBSS data, linked to survey data, conforming FAIR principles (Access to biomedical data)

Luzia M. Weiss

This report is Deliverable 5.2 of the Social Sciences and Humanities Open Cloud (SSHOC) project, and a result of Task 1 focusing on the legal, ethical and technological issues of access to biomedical data. The aim of the task is to make biomedical data available to the research community via data access that follows the FAIR principles. As an intermediate step to the actual data access, this deliverable provides the data access plan for making biomarker data from dried blood spot samples (DBSS) available. While this deliverable reports on the data access plan for biomarker data collected within the Survey of Health, Ageing and Retirement in Europe (SHARE), the procedure can be informative for other researchers, survey methodologists and data archives who aim on providing biomedical data collected in survey settings.

Objective health data gain importance for researches who are concerned with population ageing. SHARE therefore includes objective health measures from the beginning. In its sixth wave, SHARE additionally implemented the collection of DBSS as a further innovation. DBSS differ from traditional survey data, as they cannot be released immediately after collection and data cleaning, but they need one further step: laboratory analysis.

The SHARE DBSS are analysed for biomarkers that are associated with age-related health conditions such as cardiovascular diseases, diabetes, cognitive function, or sarcopenia. While the physical DBSS will not be accessible to external researchers, the obtained blood levels will be published as generated variables alongside the regular SHARE data.

This deliverable encompasses all relevant background information and preparatory steps for making biomarker data accessible following the FAIR principles. It first shortly sums up the implementation of the DBSS collection in SHARE. The FAIR Health principles require specific consideration of data protection and ethical requirements during preparation and implementation of health data collection. It is explained how these principles are met.

DBSS data are not directly comparable to biomarker values obtained from standard samples collected and analysed under routine laboratory conditions. The deliverable describes a structured validation experiment carried out to identify the possible effect of varying fieldwork conditions on the values measured in DBSS. The aim of the experiment was to develop biomarker-specific conversion formulae. They will be used to convert the raw DBSS values into values that are directly comparable to biomarker values obtained from standard blood samples. The conversion of raw DBSS data into easy-to-use standard-equivalents is part of SHARE’s approach to make data interoperable and re-usable.

Furthermore, the deliverable includes a description of the DBSS data linkage to the SHARE survey data and gives an overview on how SHARE data in general adhere to the FAIR principles: the data are made “findable, accessible, interoperable, and re-usable” for a broad researcher community. Regarding user access, the generated variables based on the DBSS data do not differ from the regular SHARE data. They are freely accessible, and the same conditions of use apply.

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