Abstract
BackgroundConsumer-generated health data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve health care outcomes. Like patient experience measures, these data reflect the consumer perspective and is part of a patient-centric agenda. The use of CGHD is believed to enhance diagnosis, patient engagement, and thus foster an improved therapeutic partnership with health care providers.ObjectiveThe aim of this study was to further identify how these data were used by consumers and how it influences engagement via a validated framework. In addition, carer data has not been explored for the purpose of engagement.MethodsStudy 1 used interviews with CGHD-experienced patients, carers, and doctors to understand attitudes about data collection and use, developing an ontological framework. Study 2 was a pilot trial with carers (parents) of children undergoing laparoscopic appendectomy. For 10 days carers generated and emailed surgical site photographs to a tertiary children’s hospital. Subsequently, carers were interviewed about the engagement framework. In total, 60 interviews were analyzed using theme and content analysis.ResultsThis study validates a framework anchored in engagement literature, which categorizes CGHD engagement outcomes into 4 domains: physiological, cognitive, emotional, and behavioral. CGHD use is complex, interconnected, and can be organized into 10 themes within these 4 domains.ConclusionsCGHD can instigate an ecosystem of engagement and provide clinicians with an enhanced therapeutic relationship through an extended view into the patient’s world. In addition to clinical diagnosis and efficient use of health care resources, data offer another tool to manage consumers service experience, especially the emotions associated with the health care journey. Collection and use of data increases consumers sense of reassurance, improves communication with providers, and promotes greater personal responsibility, indicating an empowering consumer process. Finally, it can also improve confidence and satisfaction in the service.
Highlights
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]
How should patient-generated health data (PGHD) be defined, and which concepts are central in this definition? How have health care providers and patients defined and treated PGHD up to now? A working definition evolved over the course of the environmental scan, as follows: PGHD are health-related data—including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information—created, recorded, gathered, or inferred by or from patients or their designees to help address a health concern
PGHD are distinct from data generated in clinical settings and through encounters with providers in two important ways
Summary
Two recent news stories in the business media—”Diabetic Tester That Talks to iPhones and Doctors,” in the Wall Street Journal[3] 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 Atlantic[5] 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. A key aspect of our analysis focuses on describing the various means PGHD are shared with providers and incorporated into electronic health record (EHR) technologies
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