Problem
Research questions and friction points this paper is trying to address.
patient-controlled data sharing
de-identified data
granular control
health data governance
stakeholder perspectives
We Need Granular Sharing of De-Identified Data-But Will Patients Engage? Investigating Health System Leaders' and Patients' Perspectives on A Patient-Controlled Data-Sharing Platform
🤖 AI Summary
This study investigates how to enable patients to exercise fine-grained control over the sharing of their de-identified health data while simultaneously preserving research integrity and addressing the divergent expectations of multiple stakeholders regarding privacy, transparency, and ethical considerations. Through semi-structured interviews with 16 healthcare system leaders, a large-scale survey of 523 patients, and the development of a high-fidelity web-based prototype, the research uncovers fundamental discrepancies between patients and administrators in their perceptions of data control, risk, and transparency. The work proposes context-aware, multi-literacy-adaptive design principles that support flexible granularity in data authorization and promote ongoing, benefit-oriented transparency mechanisms, thereby offering both theoretical insights and practical guidance for building a trustworthy, user-centered health data governance ecosystem.
📝 Abstract
Patient-controlled data-sharing systems are increasingly promoted as a way to empower patients with greater autonomy over their health data. Yet it remains unclear how different stakeholders, especially patients and health system leaders, perceive the benefits and challenges of enabling granular control over the sharing of de-identified medical data for research. To address this gap, we developed a high-fidelity prototype of a patient-controlled, web-based consent platform and conducted a two-phase mixed-methods study:semi-structured interviews with 16 health system leaders and a survey with 523 patient participants. While both groups appreciated the potential of such a platform to enhance transparency and autonomy, their views diverged in meaningful ways. Leaders viewed transparency and granular control through the lens of informed consent and institutional ethics, whereas patients interpreted these factors as safeguards against potential risks and uncertainties. Our findings underscore critical tensions such as individual control and research integrity. We offer design implications for building trustworthy, context-aware systems that support flexible granularity, provide ongoing benefit-centered transparency, and adapt to diverse literacy and privacy needs.
Innovation
Methods, ideas, or system contributions that make the work stand out.
patient-controlled data sharing
granular consent
de-identified data
trustworthy design
mixed-methods evaluation
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