Healthcare Data Governance Ecosystems: Balancing Privacy, Innovation, and Compliance in Real-World Evidence Platforms
DOI:
https://doi.org/10.5281/zenodo.17853218Keywords:
Healthcare Data Governance, Patient Privacy Protection, Regulatory Compliance Frameworks, Collaborative Stewardship Models, Privacy-Preserving TechnologiesAbstract
Healthcare systems increasingly rely on data. This data drives clinical operations and innovation advancement. Real-world evidence platforms have become central to modern healthcare delivery. This creates urgent needs for robust data governance frameworks. Ethical considerations in patient data management have evolved significantly. Dynamic consent models now enable patients to maintain ongoing control. They can manage their information actively. Traditional consent frameworks prove inadequate for contemporary healthcare environments. Regulatory compliance presents complex challenges. These challenges span multiple jurisdictions. The Health Insurance Portability and Accountability Act establishes foundational standards in the United States. However, international regulations add layers of complexity. The General Data Protection Regulation is one example. Algorithmic bias in healthcare algorithms raises concerns. These concerns involve fairness and equity. Collaborative stewardship models enable multi-institutional data sharing. They preserve institutional autonomy at the same time. Federated governance architectures support interoperability. They do not compromise data control. Real-world evidence platforms aggregate diverse data sources. They generate meaningful insights from this aggregation. Privacy-preserving technologies offer solutions. They balance innovation needs with privacy protection. Differential privacy represents one promising technical approach. Federated learning represents another. The European Health Data Space demonstrates emerging regulatory frameworks. These frameworks address health data governance specifically. Healthcare organizations must navigate multiple dimensions simultaneously. These include ethical principles, regulatory requirements, and technological capabilities
References
Jane Kaye, et al., "Dynamic consent: a patient interface for twenty-first century research networks," Eur J Hum Genet, 2015. [Online]. Available: https://pubmed.ncbi.nlm.nih.gov/24801761/
Harlan M Krumholz, "Big data and new knowledge in medicine: the thinking, training, and tools needed for a learning health system," Health Aff (Millwood), 2014. [Online]. Available: https://pubmed.ncbi.nlm.nih.g ov/ 25006142/
Brent Daniel Mittelstadt and Luciano Floridi, "The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts," Sci Eng Ethics, 2016. [Online]. Available: https://pubmed.ncbi.nlm.nih.gov/260024 96/
Sylvie Delacroix and Neil D Lawrence, "Bottom-up data Trusts: disturbing the ‘one size fits all’ approach to data governance," International Data Privacy Law, 2019. [Online]. Available: https://academic.oup.com/idpl/ article/9/4/236/5579842
Ziad Obermeyer, et al., "Dissecting racial bias in an algorithm used to manage the health of populations," Science, 2019. [Online]. Available: https://pubmed.ncbi.nlm.nih.gov/31649194/
Mark A Rothstein, "Genetic exceptionalism and legislative pragmatism," J Law Med Ethics, 2007. [Online]. Available: https://pubmed.ncbi.nlm.nih.gov/17543059/
U.S. Department of Health and Human Services, "Summary of the HIPAA Security Rule.” [Online]. Available: https://www.hhs.gov/hipaa/for-professionals/security/laws-regulations/index.html
David Blumenthal and Marilyn Tavenner, "The 'meaningful use' regulation for electronic health records," N Engl J Med, 2010. [Online]. Available: https://pubmed.ncbi.nlm.nih.gov/20647183/
European Commission, "Regulation (EU) 2016/679 of the European Parliament and of the Council," legislation.gov.uk, 2016. [Online]. Available: https://www.legislation.gov.uk/eur/2016/679/contents
Brussels, "Questions and Answers on the European Health Data Space," European Commission, 2024. [Online]. Available: https://ec.europa.eu/commission/presscorner/detail/en/qanda_24_2251
Surana, S. “Implementing ERP Systems in Financial Services: A Case Study on Driving Adoption and Ensuring Data Integrity." Sarcouncil Journal of Economics and Business Management 4.06 (2025): pp 1-10
Belhassen, A. " Machine Learning for Predictive Maintenance: Fusing Vibration Sensor Data and Thermal Imaging to Forecast Bearing Failure." Sarcouncil Journal of Engineering and Computer Sciences 1.3 (2022): pp 9-18
Mensah, J. B. "The Environmental Impacts of Poor Waste Management: A Call for Sustainable Action." Sarcouncil Journal of Applied Sciences 3.6 (2023): pp 1-9
Mintah, P. A. (2025). Debt-Free Property Development as a Model for Financial Sustainability. Journal Of Entrepreneurship And Business Management, 4(11), 1-9.
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