Enhancing patient autonomy in data ownership: privacy models and consent frameworks for healthcare

Enhancing patient autonomy in data ownership: privacy models and consent frameworks for healthcare
Review Article
Minal R. Narkhede, Nilesh I. Wankhede, Akanksha M. Kamble
Journal of Digital Health, 3 March 2025
Abstract
Patient autonomy in healthcare has become increasingly significant in the digital age as individuals seek greater control over their health data. This review examines the ethical, legal and technological aspects of patient data ownership, emphasizing the need for privacy models and consent frameworks to empower patients, safeguard privacy and enhance transparency. Traditional doctor-patient confidentiality faces challenges due to advancements such as electronic health records, artificial intelligence and wearable technologies, necessitating updated frameworks to protect patient rights. Privacy models such as private, public and hybrid models present varying implications for data control, security and societal benefits. Emerging technologies such as blockchain and AI are revolutionizing data privacy by decentralizing data storage and enabling patient control while ensuring secure and ethical data utilization. Advanced consent frameworks, including dynamic and granular consent, provide patients with flexibility and transparency and promote trust and active participation in data-sharing decisions. Real-world implementations, such as Australia’s My Health Record and Estonia’s e-Health system, demonstrate the potential of patient-centric privacy frameworks to enhance healthcare quality and innovation. However, significant challenges persist, including regulatory ambiguities, cybersecurity risks and gaps in digital literacy. Addressing these issues requires collaboration among stakeholders to develop adaptable, secure and interoperable systems that prioritize patient autonomy. By integrating patient education, fostering interoperability and leveraging adaptive technologies, healthcare systems can balance privacy and innovation, build trust and ensure ethical data practices that empower individuals while advancing public health objectives.