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Methods Inf Med 2020; 59(06): 205-218
DOI: 10.1055/s-0041-1727194
Original Article

A Permissioned Blockchain Network for Security and Sharing of De-identified Tuberculosis Research Data in Brazil

Vinícius Costa Lima
1   Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil
2   Bioengineering Postgraduate Program, University of São Paulo, São Carlos, Brazil
,
Filipe Andrade Bernardi
1   Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil
2   Bioengineering Postgraduate Program, University of São Paulo, São Carlos, Brazil
,
Domingos Alves
3   Department of Social Medicine, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil
,
Afrânio Lineu Kritski
4   Medical School, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil
,
Rafael Mello Galliez
4   Medical School, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil
,
Rui Pedro Charters Lopes Rijo
1   Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil
5   School of Technology and Management, Polytechnic Institute of Leiria, Leiria, Portugal
6   INESCC - Institute for Systems and Computers Engineering at Coimbra, Coimbra, Portugal
7   CINTESIS - Center for Research in Health Technologies and Services, Faculty of Medicine, University of Porto, Porto, Portugal
› Author Affiliations Funding The study was partially supported by the Brazilian National Council for Scientific and Technological Development (CNPq) - grant numbers 440758/2018-1, 22411-2019, coordinated by author A.K., and by the São Paulo Research Foundation (FAPESP) - grant number 2020/01975-9, coordinated by author D.A.
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Abstract

Background Tuberculosis (TB) is an infectious disease and is among the top 10 causes of death in the world, and Brazil is part of the top 30 high TB burden countries. Data collection is an essential practice in health studies, and the adoption of electronic data capture (EDC) systems can positively increase the experience of data acquisition and analysis. Also, data-sharing capabilities are crucial to the construction of efficient and effective evidence-based decision-making tools for managerial and operational actions in TB services. Data must be held secure and traceable, as well as available and understandable, for authorized parties.

Objectives In this sense, this work aims to propose a blockchain-based approach to build a reusable, decentralized, and de-identified dataset of TB research data, while increasing transparency, accountability, availability, and integrity of raw data collected in EDC systems.

Methods After identifying challenges and gaps, a solution was proposed to tackle them, considering its relevance for TB studies. Data security issues are being addressed by a blockchain network and a lightweight and practical governance model. Research Electronic Data Capture (REDCap) and KoBoToolbox are used as EDC systems in TB research. Mechanisms to de-identify data and aggregate semantics to data are also available.

Results A permissioned blockchain network was built using Kaleido platform. An integration engine integrates the EDC systems with the blockchain network, performing de-identification and aggregating meaning to data. A governance model addresses operational and legal issues for the proper use of data. Finally, a management system facilitates the handling of necessary metadata, and additional applications are available to explore the blockchain and export data.

Conclusions Research data are an important asset not only for the research where it was generated, but also to underpin studies replication and support further investigations. The proposed solution allows the delivery of de-identified databases built in real time by storing data in transactions of a permissioned network, including semantic annotations, as data are being collected in TB research. The governance model promotes the correct use of the solution.

Keywords

electronic data capture - data management - blockchain - data sharing - tuberculosis


Publication History

Received: 10 August 2020

Accepted: 21 February 2021

Article published online:
16 April 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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