"Fair Sharing of Health Data: A Systematic Review of Applicable Solutions"

Health science researchers face additional specific challenges. Firstly, ethical and legal issues are barriers regarding the sharing of IPD. Legislation, like the General Data Protection Regulation (GDPR [16]) in Europe or the Health Insurance Portability and Accountability Act (HIPAA [17]) in the USA, prevents research data from being openly shared. IPD can only be shared publicly after the removal of all information allowing the identification of the individual participants, unless explicit consent has been obtained from the individual participants. Furthermore, the legislation has been growing stronger over the years. State laws have emerged in the USA, like the CCPA in California [18], as well as European legislation such as the Convention 108 [19] or the proposal for a reform of ePrivacy legislation [20].

Secondly, health data are diverse and heterogeneous and can be of very different types and formats, depending on the field they belong to, e.g., imaging, genomics, and mass spectrometry. Handling these data requires specific expertise and tools which can usually only be found in the specialized, dedicated communities.

The objective of this paper is to identify and evaluate technical solutions to implement systematic data sharing in an academic context, in order to help researchers making their data FAIR. We will evaluate various software programs and online platforms used in academic projects to manage and store data through a systematic literature review focusing on the implementation of the FAIR principles and the ability to support sharing of Individual Participant Data (IPD).


| Research Data Curation and Management Works |
| Digital Curation and Digital Preservation Works |
| Open Access Works |
| Digital Scholarship |

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Author: Charles W. Bailey, Jr.

Charles W. Bailey, Jr.