Data Governance and Privacy Challenges in the Digital Healthcare Revolution

22 Pages Posted: 11 Nov 2023

See all articles by Nargiz Kazimova

Nargiz Kazimova

Duke University - Duke University School of Law

Date Written: November 7, 2023

Abstract

The onset of the COVID-19 pandemic has catalyzed an imperative for digital transformation in the healthcare sector. This study investigates the accelerated shift towards a digitally-enhanced healthcare delivery system, advocating for the widespread adoption of telemedicine and the relaxation of regulatory barriers. The paper also scrutinizes the burgeoning use of electronic health records, wearable devices, artificial intelligence, and machine learning, and how these technologies offer promising avenues for improving patient care and medical outcomes. Despite the advancements, the rapid digital integration raises significant privacy and security concerns. The stigma associated with certain illnesses and potential discrimination presents serious challenges that digital healthcare innovations can exacerbate.
This research underscores the criticality of stringent data governance to safeguard personal health information in the face of growing digitalization. The analysis begins with an exploration of the data governance role in optimizing healthcare outcomes and preserving privacy, followed by an assessment of the breadth and depth of health data proliferation. The paper subsequently navigates the complex legal and ethical terrain, contrasting HIPAA and GDPR frameworks to underline the current regulatory challenges.
A comprehensive set of strategic recommendations is provided for reinforcing data governance and enhancing privacy protection in healthcare. The author advises on updating legal provisions to match the dynamic healthcare environment, widening the scope of privacy laws, and improving the transparency of data-sharing practices. The establishment of ethical guidelines for the collection and use of health data is also recommended, focusing on explicit consent, decision-making transparency, harm accountability, maintenance of data anonymity, and the mitigation of biases in datasets.
Moreover, the study advocates for stronger transparency in data sharing with clear communication on data use, rigorous internal and external audit mechanisms, and informed consent processes. The conclusion calls for increased collaboration between healthcare providers, patients, administrative staff, ethicists, regulators, and technology companies to create governance models that reconcile patient rights with the expansive use of health data. The paper culminates in a call to action for a balanced approach to privacy and innovation in the data-driven era of healthcare.

Keywords: cybersecurity, privacy, health data, data governance, GDPR, HIPAA

JEL Classification: K29, K39

Suggested Citation

Kazimova, Nargiz, Data Governance and Privacy Challenges in the Digital Healthcare Revolution (November 7, 2023). Available at SSRN: https://ssrn.com/abstract=4626179 or http://dx.doi.org/10.2139/ssrn.4626179

Nargiz Kazimova (Contact Author)

Duke University - Duke University School of Law

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