Why patients and providers need a model patient data use agreement

The health and wellness data group lead at The MITRE Corporation offers a sneak preview of her HIMSS20 session on the topic. Opportunities are growing for individuals to access and aggregate their health data using health apps and patient portals. Most of these services require individuals to enter into agreements with terms that typically do not favor the individual or give the individual agency over their data.

A model patient data use agreement with terms that empower individuals can provide people with the opportunity to truly manage and control their aggregated health data. Personal agency over data may also increase patient engagement and activation, improve self-management and outcomes, and improve the breadth and depth of data available for shared decision-making, care management and research.

“The problem is that people lack access to and agency, or power, over their complete health data for managing their own health and engaging in their care,” said Katherine Mikk, health and wellness data group lead at The MITRE Corporation, who will be presenting on the subject at HIMSS20.