From Sharing to Selling

Mohamed Maher Orcid logo ,
Mohamed Maher
Imtiaz Khan
Imtiaz Khan

Published: 16.11.2022.

Biochemistry

Volume 5, Issue 1 (2022)

https://doi.org/10.30953/bhty.v5.184

Abstract

During the COVID-19 pandemic, we witnessed how sharing of biological and biomedical data have facilitated the researchers, medical practitioners and policymakers to tackle the pandemic at a global scale. Despite the growing use of EHR by medical practitioners and wearable digital gadgets by individuals, 80% of the health and medical data remain unused, adding little value to the researchers and medical practitioners. Legislative constraints related to health data sharing, centralised siloed design of traditional data management systems and most importantly, lack of incentivisation models are thought to be the underpinning bottlenecks for sharing health data. With the advent of the General Data Protection Regulation (GDPR) of the EU and the development of technologies like blockchain and distributed ledger technologies (DLT), it is now possible to create a new paradigm of data sharing by changing the incentivisation model from current authoritative or altruistic form to a shared economic model where financial incentivisation will be the main driver for data sharing. This can be achieved by setting up a digital health data marketplace (DHDM). Here we reviewed papers that proposed technical models or implemented frameworks that use blockchain-like technologies for health data. We seek to understand and compare different technical challenges associated with implementing and optimising the DHDM operation outlined in these papers. We also examined the legal limitations in the context of European Union and other countries such as the USA to accommodate any compliance requirement for such a marketplace. Last but not least, we reviewed papers that investigated the short, medium and long terms socioeconomic impact of such a marketplace on a wide range of stakeholders.

Keywords

References

1.
Heather B. Google DeepMind and Royal Free in five year-deal. 2016;
2.
Kowelle J. NHS data is worth billions-but who should have access to it? The Guardian. 2019;
3.
Patientslikeme.
4.
Frost JH, Massagli MP. Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data. Journal of Medical Internet Research. 2008;10(3):e15.
5.
Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, et al. Sharing Health Data for Better Outcomes on PatientsLikeMe. Journal of Medical Internet Research. 2010;12(2):e19.
6.
Gdpr. General data protection regulation. Intersoft Consulting. 2016;
7.
Kostkova P, Brewer H, de Lusignan S, Fottrell E, Goldacre B, Hart G, et al. Who Owns the Data? Open Data for Healthcare. Frontiers in Public Health. 2016;4.
8.
Houtan B, Hafid AS, Makrakis D. A Survey on Blockchain-Based Self-Sovereign Patient Identity in Healthcare. IEEE Access. 2020;8:90478–94.
9.
Nguyen DC, Pathirana PN, Ding M, Seneviratne A. Blockchain for Secure EHRs Sharing of Mobile Cloud Based E-Health Systems. IEEE Access. 2019;7:66792–806.
10.
Rifi N, Rachkidi E, Agoulmine N, Taher N. Towards using blockchain technology for eHealth data access management. 2017;1–4.
11.
Nortey R, Yue L, Agdedanu P, Adjeisah M. Privacy module for distributed electronic health records(EHRs) using the blockchain. 2019;15–8.
12.
Jaiman V, Urovi V. A Consent Model for Blockchain-Based Health Data Sharing Platforms. IEEE Access. 2020;8:143734–45.
13.
Ryno A, Bertram H. A permissioned blockchain approach to the authorization process in electronic health records. 2019;
14.
Havelange A, Dumontier M, Wouters B. LUCE: A blockchain solution for monitoring data License accoUntability and CompliancE. 2019;
15.
Dubosson F, Ranvier JE, Bromuri S, Calbimonte JP, Ruiz J, Schumacher M. The open D1NAMO dataset: A multi-modal dataset for research on non-invasive type 1 diabetes management. Informatics in Medicine Unlocked. 2018;13:92–100.
16.
Guo H, Li W, Nejad M, Shen C. Access control for electronic health records with hybrid blockchain-edge architecture. IEEE. 2019;14–7.
17.
Wang H, Song Y. Secure Cloud-Based EHR System Using Attribute-Based Cryptosystem and Blockchain. Journal of Medical Systems. 2018;42(8).
18.
Guo R, Shi H, Zhao Q, Zheng D. Secure Attribute-Based Signature Scheme With Multiple Authorities for Blockchain in Electronic Health Records Systems. IEEE Access. 2018;6:11676–86.
19.
Sun Y, Zhang R, Wang X, Gao K, Liu L. A decentralizing attribute-based signature for healthcare blockchain. 2018;
20.
Seol K, Kim YG, Lee E, Seo YD, Baik DK. Privacy-Preserving Attribute-Based Access Control Model for XML-Based Electronic Health Record System. IEEE Access. 2018;6:9114–28.
21.
Yang X, Li T, Rui L. Blockchain-based secure and searchable ehr sharing scheme. 2019;24–6.
22.
Maher M, Khan I. From Sharing to Selling. Blockchain in Healthcare Today. 2022;
23.
Azaria A, Ekblaw A, Vieira T, Lippman A. :22–4.
24.
Yang H, Yang B. A blockchain-based approach to the secure sharing of healthcare data. 2017;
25.
Xia Q, Sifah EB, Asamoah KO, Gao J, Du X, Guizani M. MeDShare: Trust-Less Medical Data Sharing Among Cloud Service Providers via Blockchain. IEEE Access. 2017;5:14757–67.
26.
Huang J, Qi Y, Asghar M, Meads A, Tu Y. Med-Bloc: A blockchain-based secure EHR system for sharing and accessing medical data. 2019;5–8.
27.
Liu X, Wang Z, Jin C, Li F, Li G. A Blockchain-Based Medical Data Sharing and Protection Scheme. IEEE Access. 2019;7:118943–53.
28.
Zhuang Y, Sheets LR, Chen YW, Shae ZY, Tsai JJP, Shyu CR. A Patient-Centric Health Information Exchange Framework Using Blockchain Technology. IEEE Journal of Biomedical and Health Informatics. 2020;24(8):2169–76.
29.
Xu L, Bagula A, Isafiade O, Ma K, Chiwewe T. Design of a Credible Blockchain-Based E-Health Records (CB-EHRS) platform. 2019;4–6.
30.
Tang F, Ma S, Xiang Y, Lin C. An Efficient Authentication Scheme for Blockchain-Based Electronic Health Records. IEEE Access. 2019;7:41678–89.
31.
Wang Y, Zhang A, Zhang P, Wang H. Cloud-Assisted EHR Sharing With Security and Privacy Preservation via Consortium Blockchain. IEEE Access. 2019;7:136704–19.
32.
Kim M, Yu S, Lee J, Park Y, Park Y. Design of Secure Protocol for Cloud-Assisted Electronic Health Record System Using Blockchain. Sensors. 2020;20(10):2913.
33.
Vora J, Nayyar A, Tanwar S. BHEEM: A blockchain-based framework for securing electronic health records. 2018;
34.
Decem. 2018;9–13.
35.
Magyar G. Blockchain: Solving the privacy and research availability tradeoff for EHR data: A new disruptive technology in health data management. 2017 IEEE 30th Neumann Colloquium (NC). IEEE; 2017.
36.
Shahnaz A, Qamar U, Khalid A. Using Blockchain for Electronic Health Records. IEEE Access. 2019;7:147782–95.
37.
Castillo AF, Sirbu M, Davis AL. Vendor of choice and the effectiveness of policies to promote health information exchange. BMC Health Services Research. 2018;18(1).
38.
Yadav P, Steinbach M, Kumar V, Simon G. Mining Electronic Health Records (EHRs). ACM Computing Surveys. 2018;50(6):1–40.
39.
MELLO MM, ADLER‐MILSTEIN J, DING KL, SAVAGE L. Legal Barriers to the Growth of Health Information Exchange—Boulders or Pebbles? The Milbank Quarterly. 2018;96(1):110–43.
40.
Lee S, Do H. Comparison and Analysis of ISO/IEEE 11073, IHE PCD-01, and HL7 FHIR Messages for Personal Health Devices. Healthcare Informatics Research. 2018;24(1):46.
41.
Schumpeter J, Stiglitz J.
42.
Florence S. 2010;
43.
Ito R. ID-Link, an Enabler for Medical Data Marketplace. 2016 IEEE 16th International Conference on Data Mining Workshops (ICDMW). IEEE; 2016. p. 792–7.
44.
Guo C, Ashrafian H, Ghafur S, Fontana G, Gardner C, Prime M. Challenges for the evaluation of digital health solutions—A call for innovative evidence generation approaches. npj Digital Medicine. 2020;3(1).
45.
Affinito L, Fontanella A, Montano N, Brucato A. How physicians can empower patients with digital tools. Journal of Public Health. 2020;30(4):897–909.
46.
Kuek A, Hakkennes S. Healthcare staff digital literacy levels and their attitudes towards information systems. Health Informatics Journal. 2019;26(1):592–612.
47.
Ehr. CR | Electronic health records systems for clinical research. Innovative Medicines Initiative. 2016;
48.
Dupont D, Beresniak A. Assessing the Financial Impact of Reusing Electronic Health Records Data for Clinical Research: Results from the EHR4CR European Project. Journal of Health & Medical Informatics. 2016;7(3).
49.
Itala T, Tohonen H. Difficult Business Models of Digital Business Platforms for Health Data: A Framework for Evaluation of the Ecosystem Viability. 2017 IEEE 19th Conference on Business Informatics (CBI). IEEE; 2017. p. 63–9.
50.
Trifan A, Oliveira JL. A FAIR Marketplace for Biomedical Data Custodians and Clinical Researchers. 2018 IEEE 31st International Symposium on Computer-Based Medical Systems (CBMS). IEEE; 2018. p. 188–93.
51.
Roman D, Stefano G. Towards a Reference Architecture for Trusted Data Marketplaces: The Credit Scoring Perspective. 2016 2nd International Conference on Open and Big Data (OBD). IEEE; 2016. p. 95–101.
52.
Roman D, Stefano G. Towards a Reference Architecture for Trusted Data Marketplaces: The Credit Scoring Perspective. 2016 2nd International Conference on Open and Big Data (OBD). IEEE; 2016. p. 95–101.
53.
Copyright Ownership: This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, adapt, enhance this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial.

Citation

Copyright

This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 

Article metrics

Google scholar: See link

The statements, opinions and data contained in the journal are solely those of the individual authors and contributors and not of the publisher and the editor(s). We stay neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Most read articles