Ethical, Legal and Social Issues for Personal Health Records and Applications

This article discusses some of the ethical, legal and social issues that arise with the development of personal health records and applications. While personal health applications have potential to improve patient health, they also raise complex questions about patient privacy, security and decision-making.

Project HealthDesign, which funded development of new personal health application prototypes, also created an Ethical, Legal, and Social Team to examine these issues. This paper presents the primary concerns raised by the first round of Project HealthDesign projects.

Key Findings:

  • Privacy. Electronic medical records pose several challenges to patient privacy. These challenges include the design of functionality that allows patients to release only relevant information to reliable parties; the appropriateness of round-the-clock data monitoring; and the legal and ethical issues surrounding health disclosures on social networking sites.
  • Data security. Personal health records and applications record sensitive personal information across a variety of devices, including mobile devices. Ensuring both robust security and ease of use is a challenge for the designers of personal health applications.
  • Decision support. Many personal health applications provide some form of feedback and decision-making based on patient input. Automated decision support raises issues around the use of authoritative statements, interaction between automated devices and physician oversight, and use of decision support with patients with mental limitations.
  • Legal and regulatory requirements. New personal health applications raise many legal and regulatory concerns, including fulfillment of HIPAA standards for electronic information and the role of personal health applications with caregivers of patients.

While personal health records and applications present new and exciting ways to help individuals manage their health, these programs also raise legal, social, and ethical issues that must be examined before the potential of personal health records can be fully realized.