The Future of Patient Engagement in the Governance of Shared Data

Abstract

Background: The emerging health care system increasingly values patient engagement and shared decision-making between patients and their providers. The practice of these values is gaining importance as the patient-centered medical home model and personalized medicine come into greater use.

Opportunity for improvement: Exploration of patient preferences about personal health data use for research and quality improvement is a fundamental element of the provider-patient relationship. Giving patients an explicit opportunity to discuss their options about use of their data and implementing a process that allows patients to receive desired communications about how their information is used can help build patient trust, a requirement for successful care partnerships.

Practice advancement: Working to change organizational cultures that exclude patients from participation in important decisions related to personal health information use promotes a strong patient-provider relationship and, ultimately, lays the foundation for improved health care through expanded use of patient data.

Keywords: data collection; decision making; organizational innovation; patient engagement; patient-centered care; patient-centered outcomes research.