From Sharing to Selling
Challenges and Opportunities of Establishing a Digital Health Data Marketplace Using Blockchain Technologies
Keywords:Blockchain in healthcare, Electronic health record, Health Data Marketplace
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.
Heather B. Google DeepMind and Royal Free in five year-deal. Digitalhealth; 2016. Available from: https://www.digitalhealth.net/2016/11/google-deepmind-and-royal-free-in-five-year-deal/ [cited 19 September 2021].
Kowelle J. NHS data is worth billions—but who should have access to it? The Guardian. 2019. Available from: https://www.theguardian.com/society/2019/jun/10/nhs-data-google-alphabet-tech- [cited 19 September 2021].
PatientsLikeMe. patientslikeme.com. 2021.
Jeana HF, Michael PM. Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another’s data. J Med Internet Res. 2008;10(3):e15. doi: 10.2196/jmir.1053
Paul W, Michael M, Jeana F, et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res. 2010;12(2):e19. doi: 10.2196/jmir.1549
GDPR. General data protection regulation. Intersoft Consulting. 2016. Available at: https://gdpr-info.eu [cited 19 September 2021].
Kostkova P, Brewer H, de Lusignan S, et al. Who owns the data? Open data for healthcare. Front Public Health. 2016;4:7. doi: 10.3389/fpubh.2016.00007
Bahar H, Abdelhakim Senhaji H, Dimitrios M. A survey on blockchain-based self-sovereign patient identity in healthcare. IEEE Access. 2020;8:90478–94. doi: 10.1109/access.2020.2994090
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. doi: 10.1109/ACCESS.2019.2917555
Rifi N, Rachkidi E, Agoulmine N, Taher NC. Towards using blockchain technology for eHealth data access management. IEEE; 2017, p. 1–4.
Nortey RN, Yue L, Agdedanu PR, Adjeisah M, editors. Privacy module for distributed electronic health records(EHRs) using the blockchain. 2019 IEEE 4th International Conference on Big Data Analytics (ICBDA), 15–18 March 2019.
Jaiman V, Urovi V. A consent model for blockchain-based health data sharing platforms. IEEE Access 2020;8:143734–45. doi: 10.1109/ACCESS.2020.3014565
Ryno A, Bertram H. A permissioned blockchain approach to the authorization process in electronic health records. 2019 International Multidisciplinary Information Technology and Engineering Conference (IMITEC). 2020.
Havelange A, Dumontier M, Wouters B, et al. LUCE: A blockchain solution for monitoring data License accoUntability and CompliancE. 2019. Available at: https://arxiv.org/abs/1908.02287 [cited 19 September 2021].
Fabien D, Jean-Eudes R, Stefano B, Jean-Paul C, Juan R, Michael S. The open D1NAMO dataset: A multi-modal dataset for research on non-invasive type 1 diabetes management. Informat Med Unlocked. 2018;13:92–100. doi: 10.1016/j.imu.2018.09.003
Guo H, Li W, Nejad M, Shen C, editors. Access control for electronic health records with hybrid blockchain-edge architecture. 2019 IEEE International Conference on Blockchain (Blockchain), 14–17 July 2019.
Wang H, Song Y. Secure cloud-based EHR system using attribute-based cryptosystem and blockchain. J Med Syst. 2018;42(8):1–9. doi: 10.1007/s10916-018-0994-6
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. doi: 10.1109/ACCESS.2018.2801266
Sun Y, Zhang R, Wang X, Gao K, Liu L, editors. A decentralizing attribute-based signature for healthcare blockchain. 2018 27th International Conference on Computer Communication and Networks (ICCCN), 30 July–2 August 2018.
Seol K, Kim Y-G, Lee E, Seo Y-D, Baik D-K. Privacy-preserving attribute-based access control model for XML-based electronic health record system. IEEE Access. 2018;6(99):9114–28. doi: 10.1109/ACCESS.2018.2800288
Yang X, Li T, Rui L, et al. Blockchain-based secure and searchable ehr sharing scheme. 2019 4th International Conference on Mechanical, Control and Computer Engineering (ICMCCE), 24–26 October 2019.
Guang Y, Chunlei L. A design of blockchain-based architecture for the security of Electronic Health Record (EHR) systems. 2018 IEEE International Conference on Cloud Computing Technology and Science (CloudCom). 2018.
Azaria A, Ekblaw A, Vieira T, Lippman A, editors. MedRec: Using blockchain for medical data access and permission management. 2016 2nd International Conference on Open and Big Data (OBD), 22–24 August 2016.
Yang H, Yang B, editors. A blockchain-based approach to the secure sharing of healthcare data. Proceedings of the Norwegian Information Security Conference; 2017.
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. doi: 10.1109/ACCESS.2017.2730843
Huang J, Qi YW, Asghar MR, Meads A, Tu Y, editors. Med-Bloc: A blockchain-based secure EHR system for sharing and accessing medical data. 2019 18th IEEE International Conference on Trust, Security and Privacy in Computing and Communications/13th IEEE International Conference on Big Data Science and Engineering (TrustCom/BigDataSE); 5–8 August 2019.
Xiaoguang L, Ziqing W, Chunhua J, Fagen L, Gaoping L. A blockchain-based medical data sharing and protection scheme. IEEE Access. 2019;7:118943–53. doi: 10.1109/access.2019.2937685
Zhuang Y, Sheets LR, Chen YW, Shae ZY, Tsai JJP, Shyu CR. A patient-centric health information exchange framework using blockchain technology. IEEE J Biomed Health Informat 2020;24(8):2169–76. doi: 10.1109/JBHI.2020.2993072
Xu L, Bagula A, Isafiade O, Ma K, Chiwewe T, editors. Design of a Credible Blockchain-Based E-Health Records (CB-EHRS) platform. 2019 ITU Kaleidoscope: ICT for Health: Networks, Standards and Innovation (ITU K), 4–6 December 2019.
Tang F, Ma S, Xiang Y, Lin C. An efficient authentication scheme for blockchain-based electronic health records. IEEE Access. 2019;7:41678–89. doi: 10.1109/ACCESS.2019.2904300
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. doi: 10.1109/ACCESS.2019.2943153
Kim M, Yu S, Lee J, Park Y, Park Y. Design of secure protocol for cloud-assisted electronic health record system using blockchain. Sensors (Basel, Switzerland) 2020;20(10):2913. doi: 10.3390/s20102913
Vora J, Nayyar A, Tanwar S, et al., editors. BHEEM: A blockchain-based framework for securing electronic health records. 2018 IEEE Globecom Workshops (GC Wkshps); 9–13 December 2018.
Magyar G, editor. 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); 24–25 November 2017. doi: 10.1109/NC.2017.8263269
Ayesha S, Usman Q, Ayesha K. Using blockchain for electronic health records. IEEE Access. 2019;7:147782–95. doi: 10.1109/access.2019.2946373
Castillo AF, Sirbu M, Davis AL. Vendor of choice and the effectiveness of policies to promote health information exchange. BMC Health Serv Res 2018;18(1):405–12. doi: 10.1186/s12913-018-3230-7
Yadav P. Mining electronic health records (EHRs): A survey. ACM Comput Surv. 2017;50(6):1–41. doi: 10.1145/3127881
Michellem M. Legal barriers to the growth of health information exchange—Boulders or pebbles? Milbank Q 2018;96(1):110–44. doi: 10.1111/1468-0009.12313
Lee S, Do H. Comparison and analysis of ISO/IEEE 11073, IHE PCD-01, and HL7 FHIR messages for personal health devices. Healthc Inform Res. 2018;24(1):46–52. doi: 10.4258/hir.2018.24.1.46
Schumpeter JA, Stiglitz JE. Capitalism, socialism and democracy. Florence, SC: Taylor & Francis Group; 2010.
Ryuji I. ID-link, an enabler for medical data marketplace. IEEE. 2016. doi: 10.1109/ICDMW.2016.0117
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 Digit Med. 2020;3(1):1–14. doi: 10.1038/s41746-020-00314-2
Affinito L, Fontanella A, Montano N, Brucato A. How physicians can empower patients with digital tools. J Public Health. 2020:1–13.doi: 10.1007/s10389-020-01370-4
Kuek A, Hakkennes S. Healthcare staff digital literacy levels and their attitudes towards information systems. Health Informatics J. 2020 Mar;26(1):592–612. doi: 10.1177/1460458219839613
EHR4CR | Electronic health records systems for clinical research. Innovative Medicines Initiative. 2016. Available at: https://www.imi.europa.eu/projects-results/project-factsheets/ehr4cr [cited 19 September 2021].
Dupont D, Beresniak A, Schmidt A, Proeve J, Bolanos E. Assessing the financial impact of reusing electronic health records data for clinical research: Results from the EHR4CR European project. J Health Med Informat. 2016;7(3):235. doi: 10.4172/2157-7420.1000235
Timo I, Harri T. 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); 2017. doi: 10.1109/cbi.2017.6
Alina T, Jose Luis O. A FAIR marketplace for biomedical data custodians and clinical researchers. 2018 IEEE 31st International Symposium on Computer-Based Medical Systems (CBMS); 2018. doi: 10.1109/cbms.2018.00040
Dumitru R, Gatti S. Towards a reference architecture for trusted data marketplaces: The credit scoring perspective. 2016 2nd International Conference on Open and Big Data (OBD). 2016. doi: 10.1109/obd.2016.21
Roman D, Stefano G, editors. Towards a reference architecture for trusted data marketplaces: The credit scoring perspective. 2016 2nd International Conference on Open and Big Data (OBD); 22–24 August 2016. doi: 10.1109/OBD.2016.21
How to Cite
Copyright (c) 2022 Mohamed Maher, Imtiaz Khan
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Authors retain copyright of their work, with first publication rights granted to Blockchain in Healthcare Today (BHTY). Read the full Copyright Statement.