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Original Articles

Improving big data governance in healthcare institutions: user experience research for honest broker based application to access healthcare big data

ORCID Icon, ORCID Icon, ORCID Icon, , ORCID Icon & ORCID Icon
Pages 1067-1095 | Received 17 Oct 2022, Accepted 15 Mar 2023, Published online: 04 Apr 2023

References

  • The Data Governance Institute. 2021. Definitions of Data Governance. [Online]. Accessed August 4, 2021 from https://datagovernance.com/the-data-governance-basics/definitions-of-data-governance/.
  • Abraham, R., J. Schneider, and J. Vom Brocke. 2019. “Data Governance: A Conceptual Framework, Structured Review, and Research Agenda.” International Journal of Information Management 49: 424–438. doi:10.1016/j.ijinfomgt.2019.07.008.
  • Alarcon, M. L., M. Nguyen, S. Debroy, N. R. Bhamidipati, P. Calyam, and A. Mosa. 2021. “Trust Model for Efficient Honest Broker Based Healthcare Data Access and Processing.” In 2021 IEEE International Conference on Pervasive Computing and Communications Workshops and Other Affiliated Events (PerCom Workshops), March, 201–206. Kassel, Germany: IEEE.
  • Alhassan, I., D. Sammon, and M. Daly. 2016. “Data Governance Activities: An Analysis of the Literature.” Journal of Decision Systems 25 (Suppl. 1): 64–75. doi:10.1080/12460125.2016.1187397.
  • Alofaysan, S., B. Alhaqbani, R. Alseghayyir, and M. Omar. 2014. “The Significance of Data Governance in Healthcare.” BIOSTEC 2014: Proceedings of the International Joint Conference on Biomedical Engineering Systems and Technologies 5: 178–187. doi:10.5220/0004738101780187.
  • Ancker, J. S., L. M. Kern, E. Abramson, and R. Kaushal. 2012. “The Triangle Model for Evaluating the Effect of Health Information Technology on Healthcare Quality and Safety.” Journal of the American Medical Informatics Association 19 (1): 61–65. doi:10.1136/amiajnl-2011-000385.
  • Bai, L., D. Yang, X. Wang, L. Tong, X. Zhu, N. Zhong, C. Bai, et al. 2020. “Chinese Experts’ Consensus on the Internet of Things-Aided Diagnosis and Treatment of Coronavirus Disease 2019 (COVID-19).” Clinical EHealth 3: 7–15. doi:10.1016/j.ceh.2020.03.001.
  • Bangor, A., P. T. Kortum, and J. T. Miller. 2008. “An Empirical Evaluation of the System Usability Scale.” International Journal of Human–Computer Interaction 24 (6): 574–594. doi:10.1080/10447310802205776.
  • Bangor, A., P. Kortum, and J. Miller. 2009. “Determining What Individual SUS Scores Mean: Adding an Adjective Rating Scale.” Journal of Usability Studies 4 (3): 114–123. doi:10.5555/2835587.2835589.
  • Bietz, M. J., E. P. S. Baumer, and C. P. Lee. 2010. “Synergizing in Cyberinfrastructure Development.” Computer Supported Cooperative Work (CSCW) 19 (3): 245–281. doi:10.1007/s10606-010-9114-y.
  • Bietz, M. J., T. Ferro, and C. P. Lee. 2012. “Sustaining the Development of Cyberinfrastructure: An Organization Adapting to Change.” In Proceedings of the ACM 2012 Conference on Computer Supported Cooperative Work, 901–910. Seattle, Washington: ACM. doi:10.1145/2145204.2145339
  • Boyd, A. D., C. Hosner, D. A. Hunscher, B. D. Athey, D. J. Clauw, and L. A. Green. 2007. “An ‘Honest Broker’ Mechanism to Maintain Privacy for Patient Care and Academic Medical Research.” International Journal of Medical Informatics 76 (5–6): 407–411. doi:10.1016/j.ijmedinf.2006.09.004.
  • Carpenter, K. A., and X. Huang. 2018. “Machine Learning-Based Virtual Screening and its Applications to Alzheimer's Drug Discovery: A Review.” Current Pharmaceutical Design 24 (28): 3347–3358. doi:10.2174/1381612824666180607124038.
  • Chen, P. T., C. L. Lin, and W. N. Wu. 2020. “Big Data Management in Healthcare: Adoption Challenges and Implications.” International Journal of Information Management 53 (102078): 1–11. doi:10.1016/j.ijinfomgt.2020.102078
  • Edwards, P. J., K. P. Moloney, J. A. Jacko, and F. Sainfort. 2008. “Evaluating Usability of a Commercial Electronic Health Record: A Case Study.” International Journal of Human-Computer Studies 66 (10): 718–728. doi:10.1016/j.ijhcs.2008.06.002.
  • Faulkner, L. 2003. “Beyond the Five-User Assumption: Benefits of Increased Sample Sizes in Usability Testing.” Behavior Research Methods, Instruments, & Computers 35 (3): 379–383. doi:10.3758/BF03195514.
  • Fleissner, B., K. Jasti, and J. Ales. 2014. The Importance of Data Governance in Healthcare, 1–11, October. [White Paper].
  • Grudin, J. 1988. “Why CSCW Applications Fail: Problems in the Design and Evaluation of Organizational Interfaces.” In Proceedings of the 1988 ACM Conference on Computer-Supported Cooperative Work, January, 85–93. New York, NY, USA: ACM.
  • Harte, R., L. Glynn, A. Rodríguez-Molinero, P. M. Baker, T. Scharf, L. R. Quinlan, and G. ÓLaighin. 2017. “A Human-Centered Design Methodology to Enhance the Usability, Human Factors, and User Experience of Connected Health Systems: A Three-Phase Methodology.” JMIR Human Factors 4 (1): e8. doi:10.2196/humanfactors.5443.
  • Hess, S. 2021. “Five Practical Steps Towards Healthcare Data Governance.” HealthCatalyst, June. [Online]. Accessed November 20, 2021 from https://www.healthcatalyst.com/insights/healthcare-data-governance-5-step-strategy/.
  • Jonassen, D. H. 1995. “Operationalizing mental models: strategies for assessing mental models to support meaningful learning and design-supportive learning environments.” In CSCL’95: The First International Conference on Computer Support for Collaborative Learning, 182–186, October. ACM. doi:10.3115/222020.222166
  • JupyterHub. 2022. Jupyter. Accessed September 8, 2022. https://jupyter.org/hub.
  • Kee, K. F., and A. R. Schrock. 2019. “Best Social and Organizational Practices of Successful Science Gateways and Cyberinfrastructure Projects.” Future Generation Computer Systems 94: 795–801. doi:10.1016/j.future.2018.04.063.
  • Kurdi, H., S. Alsalamah, A. Alatawi, S. Alfaraj, L. Altoaimy, and S. H. Ahmed. 2019. “HealthyBroker: A Trustworthy Blockchain-Based Multi-Cloud Broker for Patient-Centered EHealth Services.” Electronics 8: 602–619. doi:10.3390/electronics8060602.
  • Lee, C. P., M. J. Bietz, and A. Thayer. 2010. “Research-driven Stakeholders in Cyberinfrastructure use and Development.” In 2010 International Symposium on Collaborative Technologies and Systems, 163–172. Chicago, IL: IEEE Xplore. doi:10.1109/CTS.2010.5478514.
  • Lee, C. P., P. Dourish, and G. Mark. 2006. “The Human Infrastructure of Cyberinfrastructure.” In CSCW’06: Proceedings of the 2006 20th Anniversary Conference on Computer Supported Cooperative Work, 483–492. Banff, Alberta, Canada: ACM.
  • Lewis, J. R. 2018. “The System Usability Scale: Past, Present, and Future.” International Journal of Human-Computer Interaction 34 (7): 577–590. doi:10.1080/10447318.2018.1455307.
  • Lewis, J. R., and J. Sauro. 2009. “The Factor Structure of the System Usability Scale.” In Human Centered Design, edited by M. Kurosu, 94–103. Springer. doi:10.1007/978-3-642-02806-9_12
  • Lewis, J. R., and J. Sauro. 2022, January 18. Sample Sizes for a SUS Score. MeasuringU. Accessed September 8, 2022. https://measuringu.com/sample-sizes-for-sus-ci/.
  • Lewis, J. R., B. S. Utesch, and D. E. Maher. 2015. “Measuring Perceived Usability: The SUS, UMUX-LITE, and AltUsability.” International Journal of Human-Computer Interaction 31: 496–505. doi:10.1080/10447318.2015.1064654.
  • Li, S., K. Singh, N. Riedel, F. Yu, and I. Jahnke. 2022. “Digital Learning Experience Design and Research of a Self-Paced Online Course for Risk-Based Inspection of Food Imports.” Food Control 135: 108698. doi:10.1016/j.foodcont.2021.108698.
  • Loyola-Gonzalez, O. 2019. “Black-box vs. White-box: Understanding Their Advantages and Weaknesses from a Practical Point of View.” IEEE Access 7: 154096–154113. doi:10.1109/ACCESS.2019.2949286.
  • Maghded, H. S., K. Z. Ghafoor, A. S. Sadiq, K. Curran, D. B. Rawat, and K. Rabie. 2020. “A Novel AI-Enabled Framework to Diagnose Coronavirus COVID-19 Using Smartphone Embedded Sensors: Design Study.” In 2020 IEEE 21st International Conference on Information Reuse and Integration for Data Science (IRI), August, 180–187. Las Vegas, NV: IEEE.
  • Melles, M., A. Albayrak, and R. Goossens. 2021. “Innovating Health Care: Key Characteristics of Human-Centered Design.” International Journal for Quality in Health Care 33 (Suppl_1): 37–44. doi:10.1093/intqhc/mzaa127.
  • Melnick, E. R., E. P. Hess, G. Guo, M. Breslin, K. Lopez, A. J. Pavlo, F. Abujarad, S. M. Powsner, and L. A. Post. 2017. “Patient-centered Decision Support: Formative Usability Evaluation of Integrated Clinical Decision Support with a Patient Decision aid for Minor Head Injury in the Emergency Department.” Journal of Medical Internet Research 19 (5): e174. doi:10.2196/jmir.7846.
  • Milligan, M. 2017. “Interactive HPC Gateways with Jupyter and Jupyterhub.” In Proceedings of Practice and Experience in Advanced Research Computing (PEARC17), July, 1–4. New Orleans, LA, USA: ACM. doi:10.1145/3093338.3104159
  • Minopoulos, G. M., V. A. Memos, C. L. Stergiou, K. D. Stergiou, A. P. Plageras, M. P. Koidou, and K. E. Psannis. 2022. “Exploitation of Emerging Technologies and Advanced Networks for a Smart Healthcare System.” Applied Sciences 12 (12): 5859. doi:10.3390/app12125859.
  • Mumford, E. 2006. “The Story of Socio-Technical Design: Reflections on its Successes, Failures and Potential.” Information Systems Journal 16: 317–342. doi:10.1111/j.1365-2575.2006.00221.x.
  • Nielsen, J. 1994. 10 Usability Heuristics for User Interface Design. Nielsen Norman Group. Accessed January 8, 2022. https://www.nngroup.com/articles/ten-usability-heuristics/.
  • Purohit, S., P. Calyam, M. L. Alarcon, N. R. Bhamidipati, A. Mosa, and K. Salah. 2021. “HonestChain: Consortium Blockchain for Protected Data Sharing in Health Information Systems.” Peer-to-Peer Networking and Applications 14: 3012–3028. doi:10.1007/s12083-021-01153-y.
  • Raghupathi, W., and V. Raghupathi. 2014. “Big Data Analytics in Healthcare: Promise and Potential.” Health Information Science and Systems 2 (3): 1–10. doi:10.1186/2047-2501-2-3.
  • Rudin, C. 2019. “Stop Explaining Black box Machine Learning Models for High Stakes Decisions and use Interpretable Models Instead.” Nature Machine Intelligence 1 (5): 206–215. doi:10.1038/s42256-019-0048-x.
  • Sauro, J. 2011a. What is a Good Task Completion Rate? MeasuringU, March 21. https://measuringu.com/task-completion/.
  • Sauro, J. 2011b. A Practical Guide to the System Usability Scale: Background, Benchmarks & Best Practices. Denver, CO: Measuring Usability LLC.
  • Sauro, J. 2012. 10 Things to Know about the Single Ease Question (SEQ). MeasuringU. https://measuringu.com/seq10/.
  • Schmidt, M., A. P. Fisher, J. Sensenbaugh, B. Ling, C. Rietta, L. Babcock, B. G. Kurowski, and S. L. Wade. 2020. “User Experience (re)Design and Evaluation of a Self-Guided, Mobile Health App for Adolescents with Mild Traumatic Brain Injury.” Journal of Formative Design in Learning 4 (2): 51–64. doi:10.1007/s41686-019-00038-x.
  • Shahbaz, M., C. Gao, L. Zhai, F. Shahzad, and Y. Hu. 2019. “Investigating the Adoption of Big Data Analytics in Healthcare: The Moderating Role of Resistance to Change.” Journal of Big Data 6 (6): 1–20. doi:10.1186/s40537-019-0170-y.
  • Singh, K., I. Jahnke, A. Mosa, and P. Calyam. 2021. “The Winding Road of Requesting Healthcare Data for Anvalytics Purposes: Using the One-Interview Mental Model Method for Improving Services of Health Data Governance and big Data Request Processes.” Journal of Business Analytics, 1–18. doi:10.1080/2573234X.2021.1992305.
  • Singh, K., S. Li, I. Jahnke, A. Pandey, Z. Lyu, T. Joshi, and P. Calyam. 2020. “A Formative Usability Study to Improve Prescriptive Systems for Bioinformatics big Data.” In 2020 IEEE International Conference on Bioinformatics and Biomedicine (BIBM), December, 735–742. IEEE.
  • Stergiou, K. D., G. M. Minopoulos, V. A. Memos, C. L. Stergiou, M. P. Koidou, and K. E. Psannis. 2022. “A Machine Learning-Based Model for Epidemic Forecasting and Faster Drug Discovery.” Applied Sciences 12 (21): 10766. doi:10.3390/app122110766.
  • Stubbs, J., J. Looney, M. Poindexter, E. Chalhoub, G. J. Zynda, E. S. Ferlanti, M. Vaughn, J. M. Fonner, and M. Dahan. 2020. “Integrating Jupyter Into Research Computing Ecosystems: Challenges and Successes in Architecting JupyterHub for Collaborative Research Computing Ecosystems.” In Practice and Experience in Advanced Research Computing (PEARC ‘20), July, 1–8. Portland, OR, USA: ACM. doi:10.1145/3311790.3396648.
  • Suver, C., A. Thorogood, M. Doerr, J. Wilbanks, and B. Knoppers. 2020. “Bringing Code to Data: Do Not Forget Governance.” Journal of Medical Internet Research 22 (7): e18087. doi:10.2196/18087.
  • Thurmond, V. A. 2001. “The Point of Triangulation.” Journal of Nursing Scholarship 33 (3): 253–258. doi:10.1111/j.1547-5069.2001.00253.x.
  • Tse, D., C. K. Chow, T. P. Ly, C. Y. Tong, and K. W. Tam. 2018. “The Challenges of Big Data Governance in Healthcare.” In 2018 17th IEEE International Conference on Trust, Security and Privacy in Computing and Communications/12th IEEE International Conference on Big Data Science and Engineering (TrustCom/BigDataSE), 1632–1636. IEEE.
  • Tullis, T., and B. Albert. 2013. Measuring the User Experience: Collecting, Analyzing, and Presenting Usability Metrics. Waltham, MA: Elsevier Inc.
  • Valluripally, S., M. Raju, P. Calyam, M. Lemus, S. Purohit, A. Mosa, and T. Joshi. 2019. “Increasing Protected Data Accessibility for age-Related Cataract Research Using a Semi-Automated Honest Broker.” Modeling and Artificial Intelligence in Ophthalmology 2 (3): 115–132. doi:10.35119/maio.v2i3.102.
  • Van Den Haak, M., M. De Jong, and P. Jan Schellens. 2003. “Retrospective vs. Concurrent Think-Aloud Protocols: Testing the Usability of an Online Library Catalogue.” Behaviour & Information Technology 22 (5): 339–351. doi:10.1080/0044929031000.
  • Varshney, L. R. 2016. “Fundamental Limits of Data Analytics in Sociotechnical Systems.” Frontiers in ICT 3 (2): 1–7. doi:10.3389/fict.2016.00002.
  • Wang, Y., L. Kung, and T. A. Byrd. 2018. “Big Data Analytics: Understanding its Capabilities and Potential Benefits for Healthcare Organizations.” Technological Forecasting and Social Change 126: 3–13.
  • Westbrook, J. I., J. Braithwaite, A. Georgiou, A. Ampt, N. Creswick, E. Coiera, and R. Iedema. 2007. “Multimethod Evaluation of Information and Communication Technologies in Health in the Context of Wicked Problems and Sociotechnical Theory.” Journal of the American Medical Informatics Association 14 (6): 746–755. doi:10.1197/jamia.M2462.

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