Journal of Medical Systems

, Volume 36, Issue 6, pp 3893–3905 | Cite as

Designing Patient-Centered Personal Health Records (PHRs): Health Care Professionals’ Perspective on Patient-Generated Data

Original Paper

Abstract

Currently, patients not only want access to various medical records their health care providers keep about them, but they also are willing to become active participants in managing their own health information and the health information of the ones they care for. Personal health records were developed to help fulfill this need. Health care professionals are instrumental in the successful adoption of PHRs. Nevertheless, a full understanding of different health care practitioners’ views of PHRs, including how PHRs could fit into the existing health care system, is lacking. The purpose of this exploratory study is to investigate PHRs from the perspective of health care professionals. Twenty-one practitioners with 10 different specialties were interviewed. The results suggest that although PHRs were still a novel concept to the study participants, a majority of them did value information provided by patients and would recommend that patients keep such records. Participants with different specialties tended to look for different types of information to be included in PHRs, and wished the information to be presented in ways that supported their work, as well as supported knowledge discovery. The participants also expressed a need to share patient information, but had various concerns about sharing. The implications of the results of the study in regard to the design of future PHR systems are discussed.

Keywords

Personal health records Patient-generated data Patient-centered care Health care professionals Patient-physician relationship System design Data visualization 

References

  1. 1.
    Baird, A., North, F., and Raghu, T. S., Personal health records (PHR) and the future of the physician-patient relationship. Proceedings of the 2011 iConference. ACM, New York, NY, USA, pp. 281–288, 2011.Google Scholar
  2. 2.
    Markle Foundation, Survey finds Americans want electronic personal health information to improve own health care, http://www.markle.org/publications/1214-survey-finds-americans-want-electronic-personal-health-information-improve-own-hea, 2006.
  3. 3.
    Markle Foundation, Americans want benefits of personal health records, http://www.markle.org/publications/950-americans-want-benefits-personal-health-records, 2003.
  4. 4.
    Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., and Sands, D. Z., Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J. Am. Med. Inform. Assoc. 13:121–126, 2006.CrossRefGoogle Scholar
  5. 5.
    Wald, J. S., Businger, A., Gandhi, T. K., Grant, R. W., Poon, E. G., Schnipper, J. L., Volk, L. A., and Middleton, B., Implementing practice-linked pre-visit electronic journals in primary care: patient and physician use and satisfaction. J. Am. Med. Inform. Assoc. 17:502–506, 2010.CrossRefGoogle Scholar
  6. 6.
    Cognetti, G., and Cecere, L., E-oncology and health portals: instructions and standards for the evaluation, production organisation and use. J. Exp. Clin. Cancer Res. 22:677–686, 2003.Google Scholar
  7. 7.
    Ueckert, F., Goerz, M., Ataian, M., Tessmann, S., and Prokosch, H.-U., Empowerment of patients and communication with health care professionals through an electronic health record. Int. J. Med. Inform. 70:99–108, 2003.CrossRefGoogle Scholar
  8. 8.
    Wald, J. S., Middleton, B., Bloom, A., Walmsley, D., Gleason, M., Nelson, E., Li, Q., Epstein, M., Volk, L., and Bates, D. W., A patient-controlled journal for an electronic medical record: issues and challenges. Stud. Health Technol. Inform. 107:1166–1170, 2004.Google Scholar
  9. 9.
    Hassol, A., Walker, J. M., Kidder, D., Rokita, K., Young, D., Pierdon, S., Deitz, D., Kuck, S., and Ortiz, E., Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging. J. Am. Med. Inform. Assoc. 11:505–513, 2004.CrossRefGoogle Scholar
  10. 10.
    Wildemuth, B. M., Blake, C. L., Spurgin, K., Oh, S., and Zhang, Y., Patient’s perspectives on personal health records: An assessments of needs and concerns. Presented at the Critical Issues in eHealth Research 2006, 2006.Google Scholar
  11. 11.
    Ross, S. E., Todd, J., Moore, L. A., Beaty, B. L., Wittevrongel, L., and Lin, C.-T., Expectations of patients and physicians regarding patient-accessible medical records. J. Med. Internet Res. 7:e13, 2005.CrossRefGoogle Scholar
  12. 12.
    Reti, S. R., Feldman, H. J., and Safran, C., Governance for personal health records. J. Am. Med. Inform. Assoc. 16:14–17, 2009.CrossRefGoogle Scholar
  13. 13.
    Hemminger, B. M., Long, T., Saelim, B., Comparison of visualization techniques for displaying medication history to older adults. UNC. UNC SILS Technical Report TR-2006-04, 2006.Google Scholar
  14. 14.
    Marchionini, G., Rimer, B. K., and Wildemuth, B., Evidence base for personal health record usability: Final report to the National Cancer Institute. University of North Carolina at Chapel Hill, Chapel Hill, 2007.Google Scholar
  15. 15.
    Siek, K. A., Khan, D. U., Ross, S. E., Haverhals, L. M., Meyers, J., and Cali, S. R., Designing a personal health application for older adults to manage medications: a comprehensive case study. J. Med. Syst. 35:1099–1121, 2011.CrossRefGoogle Scholar
  16. 16.
    Luo, G., Thomas, S. B., and Tang, C., Automatic home medical product recommendation. J. Med. Syst. 36:383–398, 2012.CrossRefGoogle Scholar
  17. 17.
    Wiesner, M., and Pfeifer, D., Adapting recommender systems to the requirements of personal health record systems. Proceedings of the 1st ACM International Health Informatics Symposium. ACM, New York, NY, USA, pp. 410–414, 2010.Google Scholar
  18. 18.
    Markle Foundation, The public and doctors overwhelmingly agree on Health IT priorities to improve patient care, http://www.markle.org/publications/1461-public-and-doctors-overwhelmingly-agree-health-it-priorities-improve-patient-care, 2011.
  19. 19.
    BPC: Transforming health care: The role of Health IT, http://www.bipartisanpolicy.org/library/report/transforming-health-care-role-health-it, 2012.
  20. 20.
  21. 21.
    Markle Foundation, Policies in practice: The download capability, http://www.markle.org/health/publications-briefs-health/1198-policies-practice-download-capability, 2010.
  22. 22.
    Markle Foundation, The Personal Health Working Group: Final report, http://www.policyarchive.org/collections/markle/index?section=5&id=15473, 2003.
  23. 23.
    Vincent, A., Kaelber, D. C., Pan, E., Shah, S., Johnston, D., and Middleton, B., A patient-centric taxonomy for personal health records (PHRs). AMIA Annu Symp Proc. 2008, 763–767, 2008.Google Scholar
  24. 24.
    Jones, D. A., Shipman, J. P., Plaut, D. A., and Selden, C. R., Characteristics of personal health records: findings of the Medical Library Association/National Library of Medicine Joint Electronic Personal Health Record Task Force. J. Med. Libr. Assoc. 98:243–249, 2010.CrossRefGoogle Scholar
  25. 25.
    Kaelber, D. C., Jha, A. K., Johnston, D., Middleton, B., and Bates, D. W., A research agenda for personal health records (PHRs). J. Am. Med. Inform. Assoc. 15:729–736, 2008.CrossRefGoogle Scholar
  26. 26.
    Martino, L., and Ahuja, S., Privacy policies of personal health records: An evaluation of their effectiveness in protecting patient information. Presented at the IHI’10 , Arlington, 2010.Google Scholar
  27. 27.
    Kim, M. I., and Johnson, K. B., Personal health records: evaluation of functionality and utility. J. Am. Med. Inform. Assoc. 9:171–180, 2002.CrossRefGoogle Scholar
  28. 28.
    Lillie, S. E., Brewer, N. T., and Zhang, Y., Table or bar charts? Optimizing personal electronic health records. Presented at the Annual Conference of the Society of Behavioral Medicine, Washington, DC, 2007.Google Scholar
  29. 29.
    Witry, M. J., Doucette, W. R., Daly, J. M., Levy, B. T., and Chrischilles, E. A., Family physician perceptions of personal health records. Perspect. Health Inf. Manag. 7:1d, 2010.Google Scholar
  30. 30.
    Jeffs, D., and Harris, M., The personal health record. Making it work better for general practitioners. Aust. Fam. Physician 22:1417–1419, 1993. 1421, 1424–1427.Google Scholar
  31. 31.
    Steward, D. A., Hofler, R. A., Thaldorf, C., and Milov, D. E., A method for understanding some consequences of bringing patient-generated data into Health care delivery. Med. Decis. Making 30:E1–E13, 2010.Google Scholar
  32. 32.
    Jones, R., McConville, J., Mason, D., Macpherson, L., Naven, L., and McEwen, J., Attitudes towards, and utility of, an integrated medical-dental patient-held record in primary care. Br. J. Gen. Pract. 49:368–373, 1999.Google Scholar
  33. 33.
    Lee, M., Delaney, C., and Moorhead, S., Building a personal health record from nursing perspective. Stud. Health Technol. Inform. 122:25–29, 2006.Google Scholar
  34. 34.
    Staroselsky, M., Volk, L. A., Tsurikova, R., Pizziferri, L., Lippincott, M., Wald, J., and Bates, D. W., Improving electronic health record (EHR) accuracy and increasing compliance with health maintenance clinical guidelines through patient access and input. Int. J. Med. Inform. 75:693–700, 2006.CrossRefGoogle Scholar
  35. 35.
    Siteman, E., Businger, A., Gandhi, T., Grant, R., Poon, E., Schnipper, J., Volk, L.A., Wald, J.S., and Middleton, B., Clinicians recognize value of patient review of their electronic health record data. AMIA Annu Symp Proc. 1101, 2006.Google Scholar
  36. 36.
    Wuerdeman, L., Volk, L., Pizziferri, L., Tsurikova, R., Harris, C., Feygin, R., Epstein, M., Meyers, K., Wald, J. S., Lansky, D., and Bates, D. W., How accurate is information that patients contribute to their electronic health record? AMIA Annu Symp Proc. 2005, 834–838, 2005.Google Scholar
  37. 37.
    Zhang, Y., and Wildemuth, B. M., Qualitative analysis of content. In: Wildemuth, B., (Ed.), Applications of Social Research Methods to Questions in Information and Library Science. pp. 308–319. Libraries Unlimited, Westport, CT, 2009.Google Scholar
  38. 38.
    Chase, D., Why Google Health really failed - It’s about the money, http://techcrunch.com/2011/06/26/why-google-really-failed-money/.

Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  1. 1.School of InformationUniversity of Texas at AustinAustinUSA

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