Abstract
Purpose
Data sharing is essential in health science research. This has also been acknowledged by governments and institutions who have set-up a number of regulations, laws, and initiatives to facilitate it. A large number of initiatives has been trying to address data sharing issues. With the development of the FAIR principles, a set of detailed criteria for evaluating the relevance of such solutions is now available. This article intends to help researchers to choose a suitable solution for sharing their health data in a FAIR way.
Methods
We conducted a systematic literature review of data sharing platforms adapted to health science research. We selected these platforms through a query on Scopus, PubMed, and Web of Science and filtered them based on specific exclusion criteria. We assessed their relevance by evaluating their: implementation of the FAIR principles, ease of use by researchers, ease of implementation by institutions, and suitability for handling Individual Participant Data (IPD).
Results
We categorized the 35 identified solutions as being either online or on-premises software platforms. Interoperability was the main obstacle for the solutions regarding the fulfilment of the FAIR principles. Additionally, we identified which solutions address sharing of IPD and anonymization issues. Vivli and Dataverse were identified as the two most all-round solutions for sharing health science data in a FAIR way.
Conclusions
Although no solution is perfectly adapted to share all type of health data, there are work-arounds and interesting solutions to make health research data FAIR.
Data sharing is essential in health science research. This has also been acknowledged by governments and institutions who have set-up a number of regulations, laws, and initiatives to facilitate it. A large number of initiatives has been trying to address data sharing issues. With the development of the FAIR principles, a set of detailed criteria for evaluating the relevance of such solutions is now available. This article intends to help researchers to choose a suitable solution for sharing their health data in a FAIR way.
Methods
We conducted a systematic literature review of data sharing platforms adapted to health science research. We selected these platforms through a query on Scopus, PubMed, and Web of Science and filtered them based on specific exclusion criteria. We assessed their relevance by evaluating their: implementation of the FAIR principles, ease of use by researchers, ease of implementation by institutions, and suitability for handling Individual Participant Data (IPD).
Results
We categorized the 35 identified solutions as being either online or on-premises software platforms. Interoperability was the main obstacle for the solutions regarding the fulfilment of the FAIR principles. Additionally, we identified which solutions address sharing of IPD and anonymization issues. Vivli and Dataverse were identified as the two most all-round solutions for sharing health science data in a FAIR way.
Conclusions
Although no solution is perfectly adapted to share all type of health data, there are work-arounds and interesting solutions to make health research data FAIR.
| Original language | English |
|---|---|
| Journal | Health and Technology |
| Volume | 13 |
| Issue number | 6 |
| Pages (from-to) | 869–882 |
| Number of pages | 14 |
| ISSN | 2190-7188 |
| DOIs | |
| Publication status | Published - 16 Nov 2023 |
Bibliographical note
Publisher Copyright:© 2023, The Author(s).
Keywords
- Databases, Factual
- Information Dissemination
- Information Storage and Retrieval
- Medical Informatics
- Metadata