Artikel
Making OSSE FAIR – Conception and implementation of the FAIR data principles for an open source registry for rare diseases
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Veröffentlicht: | 29. August 2017 |
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Introduction: Data on courses of a rare disease commonly supports diagnostics and decision making in patient care. Usually this data is scattered to (electronic) health records, scientific publications and even homegrown data collections of health professionals. The Open Source Registry System for Rare Diseases (OSSE) provides a browser based way to collect these data in a disease specific registry [1]. A built-in federated search mechanism makes these data available for patient care and research. In this regard OSSE should adopt an open data approach like FAIR (Findable, Accessible, Interoperable, Reusable) to further improve information retrieval for healthcare and medical research [2].
Methods: In preparation of implementing the FAIR Data principles, a “Bring Your own Data Workshop” of the Dutch Techcentre for Life Sciences was visited. The meeting provided insights into the ideas and methods behind “FAIR” and was accompanied by experts on FAIR itself, ontologies and software engineering. The aim of the workshop was the collaboration of software solution providers for registries and experts for rare diseases to provide the data of the software systems over the FAIR Data Point, which is a solution that enables users to find properties of the offered dataset (metadata). If eligible, the user can retrieve the data [3].
Results: During the workshop it was determined which modules in OSSE are already working according to the FAIR principles and which steps have to be taken in order to connect OSSE to a FAIR data point. The characteristic “Findable” is largely covered by the possibilities of the decentralized search. The decentralized search allows building queries using data elements specified in a central metadata repository (MDR).
Access to registry data from other systems („Accessible“) has not been implemented. Therefore, appropriate adjustments have to be made. We considered the FAIR aspect „Interoperable” as an essential feature in the development of OSSE. Via the MDR and its REST interface, a description of a registries data (metadata) , i.e. specifications of all data elements, can be retrieved at any time. The last property “Reusable” is available from OSSE by using the MDR and the Form Repository. The MDR allows the reuse of previous data elements in other registries, while the Form Repository allows uniform forms across multiple registries.
Discussion: The FAIR concept is particularly popular in the context of medical registers for rare diseases, since interoperability between the registry solutions plays an important role. Various institutions are currently trying to promote FAIR. It remains to be seen how "FAIR" develops into an established standard and thus create new, effective associations between registries to advance medical research. In addition, when implementing FAIR-Data, it must be considered that the applicable security principles are not infringed by data access, such as role and rights concepts
Die Autoren geben an, dass kein Interessenkonflikt besteht.
Die Autoren geben an, dass kein Ethikvotum erforderlich ist.
References
- 1.
- Storf H, Schaaf J, Kadioglu D, Göbel J, Wagner TOF, Ückert F. Register für seltene Erkrankungen - OSSE - ein Open-Source-Framework für die technische Umsetzung. Bundesgesundheitsbl. 2017:1-9.
- 2.
- Dutch Techcentre for Life Sciences. Software Solution Provider BYOD. 2016 [Accessed on: 31. March 2017]. https://www.dtls.nl/fair-data/byod/byods/software-solution-provider-byod/
- 3.
- Dutch Techcentre for Lifesciences. Specification FAIR Data Point. 2016 [Accessed on: 31. March 2017]. https://dtl-fair.atlassian.net/wiki/display/FDP/FAIR+Data+Point+Software+Specification