Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs design recommendations for patient-generated data applications

J Am Med Inform Assoc. 2016 May;23(3):491-5. doi: 10.1093/jamia/ocv199. Epub 2016 Feb 5.


Electronic health record content is created by clinicians and is driven largely by intermittent and brief encounters with patients. Collecting data directly from patients in the form of patient-generated data (PGD) provides an unprecedented opportunity to capture personal, contextual patient information that can supplement clinical data and enhance patients' self-care. The US Department of Veterans Affairs (VA) is striving to implement the enterprise-wide capability to collect and use PGD in order to partner with patients in their care, improve the patient healthcare experience, and promote shared decision making. Through knowledge gained from Veterans' and healthcare teams' perspectives, VA created a taxonomy and an evolving framework on which to design and develop applications that capture and help physicians utilize PGD. Ten recommendations for effectively collecting and integrating PGD into patient care are discussed, addressing health system culture, data value, architecture, policy, data standards, clinical workflow, data visualization, and analytics and population reach.

Keywords: Patient-generated data; activities of daily living; consumer participation; electronic data capture; mobile phone app; patient-relevant outcome; patient-reported outcome; personal health record; physician-patient relationship; self-care.

MeSH terms

  • Activities of Daily Living
  • Data Collection / methods*
  • Electronic Health Records*
  • Focus Groups
  • Humans
  • Internet / statistics & numerical data
  • Self Care*
  • Self Report
  • Self-Management
  • United States
  • United States Department of Veterans Affairs
  • Veterans