Patients, Consumers, and Caregivers: The Original Data Stewards

INTRODUCTION: For patients and families, the issue of data quality is personal. When treatment decisions or research conclusions are based on incomplete or inaccurate information—a misdiagnosis, an incomplete medication list, the wrong demographic data—care safety, quality, and outcomes suffer—and patients and families suffer. OPPORTUNITY FOR CHANGE: Thanks in part to the power of health information technology, individuals have new opportunities to be part of the solution when it comes to assessing and improving data quality. Building on a framework for data quality, there are numerous opportunities for patients to be part of ‘feedback loops’ to understand and improve data quality are presented. FOUNDATION FOR THE FUTURE: As the source of patient-centered data, consumers have important roles to play in reviewing and confirming their own health information and should be engaged partners in efforts to understand and improve the quality of electronic health data.