title: Personal health records for patients with chronic disease: a major opportunity.
abstract: BACKGROUND
  Personal health records (PHRs) connected to a physician's electronic health record system hold substantial promise for supporting and engaging patients with chronic disease.
  
  
  OBJECTIVE
  To explore how U.S. health care organizations are currently utilizing PHRs for chronic disease populations.
  
  
  METHODS
  A mixed methods study including semi-structured interviews and a questionnaire was conducted. A purposive sample was developed of health care organizations which were recognized as exemplars for PHRs and were high performers in national patient satisfaction surveys (H-CAHPS or CAHPS). Within each organization, participants were health IT leaders or those managing high-risk or chronic disease populations.
  
  
  RESULTS
  Interviews were conducted with 30 informants and completed questionnaires were received from 16 organizations (84% response rate). Most PHRs allowed patients to access health records and educational material, message their provider, renew prescriptions and request appointments. Patient generated data was increasingly being sought and combined with messaging, resulted in greater understanding of patient health and functioning outside of the clinic visit. However for chronic disease populations, there was little targeted involvement in PHR design and few tools to help interpret and manage their conditions beyond those offered for all. The PHR was largely uncoupled from high risk population management interventions and no clear framework for future PHR development emerged.
  
  
  CONCLUSIONS
  This technology is currently underutilized and represents a major opportunity given the potential benefits of patient engagement and shared decision making. A coherent patient-centric PHR design and evaluation strategy is required to realize its potential and maximize this natural hub for multidisciplinary care co-ordination.
authors.affiliation: Section of Epidemiology and Biostatistics, School of Population Health, University of Auckland , Auckland, New Zealand ; Department of General Internal Medicine, Brigham and Women's Hospital, Harvard Medical School , Boston, Massachusetts.
authors.forename: S
authors.initials: S
authors.lastname: Wells
authors.affiliation: Department of General Internal Medicine, Brigham and Women's Hospital, Harvard Medical School , Boston, Massachusetts.
authors.forename: R
authors.initials: R
authors.lastname: Rozenblum
authors.affiliation: Department of General Internal Medicine, Brigham and Women's Hospital, Harvard Medical School , Boston, Massachusetts.
authors.forename: A
authors.initials: A
authors.lastname: Park
authors.affiliation: Department of Health Care Policy and Management, Harvard School of Public Health , Boston, Massachusetts.
authors.forename: M
authors.initials: M
authors.lastname: Dunn
authors.affiliation: Department of General Internal Medicine, Brigham and Women's Hospital, Harvard Medical School , Boston, Massachusetts ; Department of Health Care Policy and Management, Harvard School of Public Health , Boston, Massachusetts.
authors.forename: D W
authors.initials: DW
authors.lastname: Bates
mesh_terms: D002908:Chronic Disease; D015897:Comorbidity; D003695:Delivery of Health Care / Q000706:statistics & numerical data; D055991:Health Records, Personal; D006801:Humans; D008991:Monitoring, Physiologic; D010820:Physicians; D011795:Surveys and Questionnaires
keywords: Personal health records; adoption; chronic disease; electronic health records