Reading: Patients, Consumers, and Caregivers: The Original Data Stewards


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Commentary / Editorial

Patients, Consumers, and Caregivers: The Original Data Stewards


Erin A. Mackay


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.

This commentary is written in response to "Transparent Reporting of Data Quality in Distributed Data Networks” (Kahn et al.) and builds on recommendations outlined in the framework.

How to Cite: Mackay EA. Patients, Consumers, and Caregivers: The Original Data Stewards. eGEMs (Generating Evidence & Methods to improve patient outcomes). 2015;3(1):8. DOI:
Published on 23 Mar 2015.
Peer Reviewed


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