Health Services Information: Personal Health Records as a Tool for Engaging Patients and Families

  • John HalamkaEmail author
Reference work entry
Part of the Health Services Research book series (HEALTHSR)


Personal Health Records have evolved from stand alone websites requiring manual entry of data to automated mobile applications fully integrated into care management workflow. Technology issues such as interoperability, security, and patient identification have matured. Policies such as who can see what for what purpose have been enumerated. Regulations now require a deeper level of interaction between care teams and patients. Many myths about the risks of engaging patients and families have been shattered. Research continues to expand the scope of information shared with families, enhance usability of patient facing applications, and improving the utility of solutions automating patient/provider workflow.


  1. AHIMA e-HIM Personal Health Record Work Group. The role of the personal health record in the EHR. J AHIMA. 2005;76(7):64A–D.Google Scholar
  2. Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc. 2011;18(4):515–22. Review.CrossRefPubMedPubMedCentralGoogle Scholar
  3. Beard L, Schein R, Morra D, Wilson K, Keelan J. The challenges in making electronic health records accessible to patients. J Am Med Inform Assoc. 2012;19(1):116–20.CrossRefGoogle Scholar
  4. Bourgeois FC, Taylor PL, Emans SJ, Nigrin DJ, Mandl KD. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J Am Med Inform Assoc. 2008a;15(6):737–43.CrossRefGoogle Scholar
  5. Bourgeois FC, Taylor PL, Emans SJ, Nigrin DJ, Mandl KD. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J Am Med Inform Assoc. 2008b;15(6):737–43. Epub 2008 Aug 28.CrossRefPubMedPubMedCentralGoogle Scholar
  6. Brennan PF, Downs S, Casper G. Project HealthDesign: rethinking the power and potential of personal health records. J Biomed Inform. 2010;43 Suppl 5:S3–5. Scholar
  7. Britto MT, Wimberg J. Pediatric personal health records: current trends and key challenges. Pediatrics. 2009;123 Suppl 2:S97–9. Scholar
  8. Collins SA, Vawdrey DK, Kukafka R, Kuperman GJ. Policies for patient access to clinical data via PHRs: current state and recommendations. J Am Med Inform Assoc. 2011;18 Suppl 1:i2–7. Epub 2011 Sep 7.CrossRefPubMedPubMedCentralGoogle Scholar
  9. Council on Clinical Information Technology. Policy Statement–Using personal health records to improve the quality of health care for children. Pediatrics. 2009;124(1):403–9. Scholar
  10. Forsyth R, Maddock CA, Iedema RA, Lassere M. Patient perceptions of carrying their own health information: approaches towards responsibility and playing an active role in their own health – implications for a patient-held health file. Health Expect. 2010;13(4):416–26. Scholar
  11. Goel MS, Brown TL, Williams A, Cooper AJ, Hasnain-Wynia R, Baker DW. Patient reported barriers to enrolling in a patient portal. J Am Med Inform Assoc. 2011;18 Suppl 1:i8–12. Epub 2011 Nov 9.CrossRefPubMedPubMedCentralGoogle Scholar
  12. Haggstrom DA, Saleem JJ, Russ AL, Jones J, Russell SA, Chumbler NR. Lessons learned from usability testing of the VA’s personal health record. J Am Med Inform Assoc. 2011;18 Suppl 1:i13–7. Epub 2011 Oct 8.CrossRefPubMedPubMedCentralGoogle Scholar
  13. Kaelber J. A research agenda for personal health records. Am Med Inform Assoc. 2008;15:729–36.CrossRefGoogle Scholar
  14. Kim EH, Stolyar A, Lober WB, Herbaugh AL, Shinstrom SE, Zierler BK, Soh CB, Kim Y. Challenges to using an electronic personal health record by a low-income elderly population. J Med Internet Res. 2009;11(4), e44. Scholar
  15. Poulton M. Patient confidentiality in sexual health services and electronic patient records. Sex Transm Infect. 2013;89(2):90. Scholar
  16. Rudd P, Frei T. How personal is the personal health record?: comment on “the digital divide in adoption and use of a personal health record”. Arch Intern Med. 2011;171(6):575–6. No abstract available.CrossRefPubMedGoogle Scholar
  17. Saparova D. Motivating, influencing, and persuading patients through personal health records: a scoping review. Perspect Health Inf Manag. 2012;9:1f. Epub 2012 Apr 1.PubMedPubMedCentralGoogle Scholar
  18. Sittig DF, Singh H. Rights and responsibilities of users of electronic health records. CMAJ. 2012;184(13):1479–83.CrossRefGoogle Scholar
  19. Sittig DF, Singh H, Longhurst CA. Rights and responsibilities of electronic health records (EHR) users caring for children. Arch Argent Pediatr. 2013;111(6):468–71.PubMedGoogle Scholar
  20. Wynia M, Dunn K. Dreams and nightmares: practical and ethical issues for patients and physicians using personal health records. J Law Med Ethics. 2010;38(1):64–73. Scholar
  21. Yamin CK, Emani S, Williams DH, Lipsitz SR, Karson AS, Wald JS, Bates DW. The digital divide in adoption and use of a personal health record. Arch Intern Med. 2011;171(6):568–74. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Emergency MedicineHarvard Medical School and Beth Israel Deaconess Medical CenterBostonUSA

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