Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care

Area of Science:

• Health Informatics
• Patient Engagement
• Digital Health

Background:

• The US healthcare system inadequately supports family or friend care partners.
• Patient use of personal health information portals is rising.
• Current technology for shared portal access is underutilized and complex.

Purpose of the Study:

• To examine challenges in patient and care partner access to health information portals.
• To highlight the need for improved systems supporting shared access.
• To emphasize the importance of care partner involvement in digital health.

Main Methods:

• Analysis of existing technology for shared portal access.
• Incorporation of personal narratives from patients and care partners.
• Discussion of the conflict between "do-it-yourself" access and healthcare system responsibilities.

Main Results:

• Shared access features are often limited or difficult to use, leading to workarounds.
• Many care partners use patient credentials, risking privacy and autonomy.
• Current systems fail to adequately support care partners' critical roles.

Conclusions:

• Electronic health record vendors and healthcare organizations must improve shared access functionality.
• Care partners should be recognized and supported as distinct, essential users of health technology.
• Streamlined, secure shared access is crucial for effective patient-centered care in the digital age.