Surveying the Landscape of Computable Consent: The Importance of Patient Control in Sensitive Data Sharing
Surveying the Landscape of Computable Consent | Healthcare Innovation
Summary
The Sequoia Project released a white paper on 'Computable Consent,' highlighting the need for granular control over health information. Experts emphasize that in the era of electronic medical records, it is crucial to move beyond simple binary sharing decisions and enable detailed control over which specific data points are shared and how.
Details
This article reports on expert discussions regarding the white paper 'Moving Toward Computable Consent: A Landscape Review,' compiled by a Sequoia Project work group. Experts point out that while laws at the federal and state levels establish patient rights concerning highly sensitive data (e.g., substance abuse treatment records, psychotherapy notes), current electronic medical record systems struggle to enable patients to exercise and have these choices honored. Specifically, when regulations mandate restricting certain sensitive information (e.g., reproductive health data), Health Information Exchanges (HIEs) require 'granular segmentation' capabilities. Without this technical ability, the only option is often non-sharing, which effectively excludes patients from interoperability and worsens health equity. Furthermore, identity management—a key element in data exchange—is discussed. Solutions include cross-organizational health data utilities or QHINs (Qualified Health Information Networks). It was suggested that linking identity management with consent management would be the most efficient approach for future interoperability improvements. Addressing these technical challenges is deemed essential for advancing the field.
Original content copyright by respective publishers