Strategic Data Stewardship in Modern Healthcare: An Integrated Governance Framework for Ensuring Quality, Privacy, and Ethical Disclosure Across Clinical, Operational, and Analytical Domains
Abstract
Background: The digital transformation of healthcare generates vast sensitive data, creating critical imperatives for robust data governance to ensure quality, privacy, and secure access across clinical and operational domains.
Aim: This study aims to develop an integrated conceptual framework to address pervasive governance gaps in healthcare organizations, including informal data-sharing and unclear accountability, which undermine data reliability and compliance.
Methods: Using a conceptual methodology, the study synthesizes governance theory with healthcare operational realities through a critical analysis of literature and best practices in informatics and data management.
Results: The proposed framework is built on four pillars: (1) strategic leadership and accountability structures; (2) risk-based data classification; (3) formalized request and disclosure workflows; and (4) embedded data quality and metadata management. It provides a structured model to transform data into a governed, high-integrity asset.
Conclusions: Effective data governance is foundational for trustworthy, data-driven healthcare. This framework offers an actionable blueprint for organizations to transition from ad-hoc practices to proactive stewardship, thereby enhancing decision-making, ensuring compliance, and supporting safe patient care.
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References
Abouelmehdi, K., Beni-Hssane, A., Khaloufi, H., & Saadi, M. (2017). Big data security and privacy in healthcare: A Review. Procedia Computer Science, 113, 73-80. https://doi.org/10.1016/j.procs.2017.08.292
Abraham, R., Schneider, J., & Vom Brocke, J. (2019). Data governance: A conceptual framework, structured review, and research agenda. International journal of information management, 49, 424-438. https://doi.org/10.1016/j.ijinfomgt.2019.07.008
Ahmadi, S., Tavana, M. M., Shokouhyar, S., & Dortaj, M. (2022). A new fuzzy approach for managing data governance implementation relevant activities. The TQM Journal, 34(5), 979-1012. https://doi.org/10.1108/TQM-01-2021-0015
Bond, C. (2020). Pharmacy Practice Research: Evidence, Impact and Synthesis. In Pharmacy practice research methods (pp. 1-30). Singapore: Springer Singapore. https://doi.org/10.1007/978-981-15-2993-1_1
Cohen, I. G., & Mello, M. M. (2018). HIPAA and protecting health information in the 21st century. Jama, 320(3), 231-232.doi:10.1001/jama.2018.5630
Dahlquist, J. M., Nelson, S. C., & Fullerton, S. M. (2023). Cloud-based biomedical data storage and analysis for genomic research: Landscape analysis of data governance in emerging NIH-supported platforms. Human Genetics and Genomics Advances, 4(3). https://doi.org/10.1016/j.xhgg.2023.100196
Dammery, G., Ellis, L. A., Churruca, K., Mahadeva, J., Lopez, F., Carrigan, A., ... & Braithwaite, J. (2023). The journey to a learning health system in primary care: a qualitative case study utilising an embedded research approach. BMC Primary Care, 24(1), 22. https://doi.org/10.1186/s12875-022-01955-w
Dixon-Woods, M., Campbell, A., Chang, T., Martin, G., Georgiadis, A., Heney, V., ... & Nelson, E. C. (2020). A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system. Implementation Science, 15(1), 16. https://doi.org/10.1186/s13012-020-0976-1
Enticott, J., Braaf, S., Johnson, A., Jones, A., & Teede, H. J. (2020). Leaders’ perspectives on learning health systems: a qualitative study. BMC Health Services Research, 20(1), 1087. https://doi.org/10.1186/s12913-020-05924-w
George, R., Truong, T., & Davidson, J. (2017). Establishing an Effective Data Governance System: Data governance is necessary for compliance with current regulatory expectations or data integrity in pharmaceutical R&D and manufacturing organizations. Pharmaceutical Technology Europe, 29(11), 40-44.
Groves, P., Kayyali, B., Knott, D., & Kuiken, S. V. (2013). The'big data'revolution in healthcare: Accelerating value and innovation. McKinsey & Company.
Hubbard, D., Freda, A., & Swanagan, A. (2020). Data governance 101: IR's critical role in data governance. New Directions for Institutional Research, 2020(185-186), 51-65. https://doi.org/10.1002/ir.20329
International, D. (2017). DAMA-DMBOK: Data management body of knowledge. Technics Publications, LLC.
International Organization for Standardization. (2013). ISO/IEC 27001: 2013: Information Technology--Security Techniques--Information Security Management Systems--Requirements. International Organization for Standardization.
ISO. (2015). ISO 8000-1:2015 Data quality — Part 1: Overview. International Organization for Standardization. Retrieved from: https://www.iso.org/standard/50798.html
Kariotis, T., Ball, M. P., Tzovaras, B. G., Dennis, S., Sahama, T., Johnston, C., ... & Borda, A. (2020). Emerging health data platforms: From individual control to collective data governance. Data & Policy, 2, e13. doi:10.1017/dap.2020.14
Khatri, V., & Brown, C. V. (2010). Designing data governance. Communications of the ACM, 53(1), 148-152. https://doi.org/10.1145/1629175.1629210
Kuzio, J., Ahmadi, M., Kim, K. C., Migaud, M. R., Wang, Y. F., & Bullock, J. (2022). Building better global data governance. Data & Policy, 4, e25. doi:10.1017/dap.2022.17
Li, J., Yu, G., Ding, W., Huang, J., Li, Z., Zhu, Z., ... & Yin, J. (2021). Data governance system of the National Clinical Research Center for child health in China. Translational Pediatrics, 10(7), 1905. https://doi.org/10.21037/tp-21-272
Liaw, S. T., Guo, J. G. N., Ansari, S., Jonnagaddala, J., Godinho, M. A., Borelli Jr, A. J., ... & Kahn, M. G. (2021). Quality assessment of real-world data repositories across the data life cycle: a literature review. Journal of the American Medical Informatics Association, 28(7), 1591-1599. https://doi.org/10.1093/jamia/ocaa340
Loshin, D. (2010). The practitioner's guide to data quality improvement. Elsevier.
Mishra, V., & Mishra, M. (2022). Privacy and security concerns with electronic health records-shreds of evidence from India. IMI Konnect, 11(3), 41-54.
Mosley, M., Brackett, M. H., Earley, S., & Henderson, D. (2010). The DAMA guide to the data management body of knowledge.
Ngesimani, N. L., Ruhode, E., & Harpur, P. A. (2022). Data governance in healthcare information systems: A systematic literature review. South African Journal of Information Management, 24(1), 1475. https://hdl.handle.net/10520/ejc-info_v24_i1_a1475
Oktaviana, S., Handayani, P. W., & Hidayanto, A. N. (2022, August). Health Data Governance Issues in Healthcare Facilities: Perspective of Hospital Management. In 2022 10th International Conference on Information and Communication Technology (ICoICT) (pp. 1-5). IEEE. https://doi.org/10.1109/ICoICT55009.2022.9914865
Otto, B. (2011). Organizing data governance: Findings from the telecommunications industry and consequences for large service providers. Communications of the Association for Information Systems, 29(1), 3. https://doi.org/10.17705/1CAIS.02903
Rose, R. V., Kumar, A., & Kass, J. S. (2023). Protecting privacy: health insurance portability and accountability act of 1996, twenty-first century cures act, and social media. Neurologic Clinics, 41(3), 513-522. https://doi.org/10.1016/j.ncl.2023.03.007
Scott, P. J., Rigby, M., Ammenwerth, E., McNair, J. B., Georgiou, A., Hyppönen, H., ... & Hackl, W. (2017). Evaluation considerations for secondary uses of clinical data: principles for an evidence-based approach to policy and implementation of secondary analysis. Yearbook of medical informatics, 26(01), 59-67. DOI: 10.15265/IY-2017-010
Spector-Bagdady, K., Armoundas, A. A., Arnaout, R., Hall, J. L., Yeager McSwain, B., Knowles, J. W., ... & American Heart Association Advocacy Coordinating Committee. (2023). Principles for health information collection, sharing, and use: a policy statement from the American Heart Association. Circulation, 148(13), 1061-1069. https://doi.org/10.1161/CIR.0000000000001173
Strome, T. L., & Liefer, A. (2013). Healthcare analytics for quality and performance improvement (p. 240). Hoboken, NJ: Wiley.
Tiffin, N., George, A., & LeFevre, A. E. (2019). How to use relevant data for maximal benefit with minimal risk: digital health data governance to protect vulnerable populations in low-income and middle-income countries. BMJ Global Health, 4(2), e001395. https://doi.org/10.1136/bmjgh-2019-001395
Topaz, M., Ronquillo, C., Peltonen, L. M., Pruinelli, L., Sarmiento, R. F., Badger, M. K., ... & Lee, Y. L. (2017, February). Nurse informaticians report low satisfaction and multi-level concerns with electronic health records: results from an international survey. In AMIA Annual Symposium Proceedings (Vol. 2016, p. 2016).
van der Nat, D. J., Huiskes, V. J., Taks, M., Pouls, B. P., van den Bemt, B. J., & van Onzenoort, H. A. (2022). Usability and perceived usefulness of patient-centered medication reconciliation using a personalized health record: a multicenter cross-sectional study. BMC Health Services Research, 22(1), 776. https://doi.org/10.1186/s12913-022-07967-7
Vassilakopoulou, P., Skorve, E., & Aanestad, M. (2016). Premises for clinical genetics data governance: Grappling with diverse value logics. In The ethics of biomedical big data (pp. 239-256). Cham: Springer International Publishing. https://doi.org/10.1007/978-3-319-33525-4_11
Wang, M., Li, S., Zheng, T., Li, N., Shi, Q., Zhuo, X., ... & Huang, Y. (2022). Big data health care platform with multisource heterogeneous data integration and massive high-dimensional data governance for large hospitals: design, development, and application. JMIR Medical Informatics, 10(4), e36481. https://doi.org/10.2196/36481
Wieland-Jorna, Y., Verheij, R. A., Francke, A. L., Tomassen, M., Houtzager, M., Joling, K. J., & Oosterveld-Vlug, M. G. (2023). Setting up a governance framework for secondary use of routine health data in nursing homes: development study using qualitative interviews. Journal of Medical Internet Research, 25, e38929. https://doi.org/10.2196/38929
Wiler, J. L., Welch, S., Pines, J., Schuur, J., Jouriles, N., & Stone‐Griffith, S. (2015). Emergency department performance measures updates: proceedings of the 2014 emergency department benchmarking alliance consensus summit. Academic Emergency Medicine, 22(5), 542-553. https://doi.org/10.1111/acem.12654
Williamson, K., Nimegeer, A., & Lean, M. (2022). Navigating data governance approvals to use routine health and social care data to evidence the hidden population with severe obesity: a case study from a clinical academic’s perspective. Journal of Research in Nursing, 27(7), 623-636. https://doi.org/10.1177/17449871221122040
World Health Organization. (2021). Is the Eastern Mediterranean Region ready for digitalizing health? implications from the global strategy on digital health (2020–2025).
Authors
Copyright (c) 2024 Sattam Deghaim M Albanaqi, Mohammed Ali Albathali, Nourah Saad Turki Alotaibi, Bader Ghazai Ghazi Alotaibi, Wael Ali Mohammed Otayn, Faisal Awad Mohammed Alsharari, Saad Shtewi Qasiem Alsharari, Abdulrahman Awad Shtewi AlSharari, Faisal Tabia Qasem Alsharari, Jumaah Husain A Alenazi, Mohammed Hathal Thunayyan Alotaibi, Modhi Falaj Herbash Alotaibi

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