Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 8, 2019
Open Peer Review Period: Feb 8, 2019 - Apr 5, 2019
Date Accepted: May 13, 2019
(closed for review but you can still tweet)
Designing a distributed ledger technology system for interoperable and GDPR-compliant health data exchange - a use case in blood glucose data
ABSTRACT
Background:
Distributed ledger technology (DLT) holds great potential to improve health information exchange. However, the immutable and transparent character of this technology may conflict with data privacy regulations and data processing best practices.
Objective:
The aim of this paper is to develop a proof-of-concept system for immutable, interoperable and GDPR-compliant exchange of blood glucose data.
Methods:
Given that there is no ideal design for a DLT-based patient-provider data exchange solution, we propose two different variations for our proof-of-concept system. One design is based purely on the public IOTA distributed ledger (a Directed Acyclic Graph-based DLT) and the second uses the same public IOTA ledger in combination with a private IPFS cluster. Both designs were assessed according to: 1) data reversal risk, 2) data linkability risks, 3) processing time, 4) file size compatibility and 5) overall system complexity.
Results:
The public IOTA design slightly increases the risk of personal data linkability, has an overall low processing time (requiring 6.1±1.9s to upload one blood glucose data sample into the DLT) and was relatively simple to implement. The combination of the public IOTA with a private IPFS cluster minimized both reversal and linkability risks, allowed for the exchange of large files (three months of blood glucose data was uploaded into the DLT in 13.3±3.7s), but involved a relatively higher setup complexity.
Conclusions:
For the specific use case of blood glucose explored in this study, both designs presented a suitable performance in enabling the interoperable exchange of data between patients and providers. Additionally, both systems were designed considering the latest guidelines on personal data processing, thereby maximizing the alignment with recent GDPR regulations. For future works, these results suggest that the conflict between DLT and data privacy regulations can be addressed if careful considerations are made with regards to the use case and the design of the data exchange system.
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.