• Report

Patient-generated health data. White paper

Citation

Shapiro, M., Johnston, D., Wald, J., & Mon, D. (2012). Patient-generated health data. White paper. (Prepared for Office of Policy and Planning, Office of the National Coordinator for Health Information Technology). Research Triangle Park, NC: RTI International.

Abstract

In his provocative keynote address at the American Medical Informatics Association (AMIA) 2011 Annual Symposium, Gregory Abowd predicted “within 5 years, the majority of clinically relevant data…will be collected outside of clinical settings.”2 The ability of a patient to record and share health data electronically, especially data from remote monitors, has placed patient-generated health data in the spotlight, and Professor Abowd’s comments are hardly the only acknowledgment of the phenomena he described. Two recent news stories in the business media—”Diabetic Tester That Talks to iPhones and Doctors,” in the Wall Street Journal3 and “As Smartphones Get Smarter, You May Get Healthier: How mHealth Can Bring Cheaper Health Care to All,” in Fast Company4—suggest that clinicians, suppliers, and patients are thinking seriously about this subject. While these stories may be speculative and focused on the business opportunities, the article, “The Quiet Health-Care Revolution,” in The Atlantic5 reported on a patient with chronic heart failure (CHF) whose life was likely saved when clinical staff responded immediately to data from an electronic scale in the patient’s home alerting them to her potentially dangerous overnight weight increase. Beyond such anecdotal reports, initial pilot studies have already been published that show promising outcomes for the use of remote monitoring in the treatment of diabetes6,7 and heart failure.8,9 The potential of clinically relevant data captured outside traditional care settings, also known as patient-generated health data (PGHD), to improve outcomes and enhance patient-provider communication is likely very substantial. Assessing this potential, however, should consider how existing health care practices and systems may be affected by PGHD, and how these may need to change, in order to realize these benefits.