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

TL;DR

This study explores health system leaders' and patients' perspectives on a patient-controlled data-sharing platform, highlighting their differing views on transparency, control, and trust, and providing design insights for trustworthy systems.

Contribution

It introduces a high-fidelity prototype and mixed-methods evaluation revealing stakeholder perceptions and informing design for granular, trustworthy health data sharing.

Findings

Both groups value transparency and control but interpret them differently.

Leaders focus on informed consent and ethics, patients on privacy safeguards.

Design implications include flexible granularity and ongoing transparency.

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.