Designing Patient-Centered Personal Health Records (PHRs): Health Care Professionals’ Perspective on Patient-Generated Data
- 1.3k Downloads
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.
KeywordsPersonal health records Patient-generated data Patient-centered care Health care professionals Patient-physician relationship System design Data visualization
- 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.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.Markle Foundation, Americans want benefits of personal health records, http://www.markle.org/publications/950-americans-want-benefits-personal-health-records, 2003.
- 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.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
- 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
- 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
- 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.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
- 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.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.BPC: Transforming health care: The role of Health IT, http://www.bipartisanpolicy.org/library/report/transforming-health-care-role-health-it, 2012.
- 20.Physician survey: What doctors wish their patients knew, http://www.consumerreports.org/cro/2012/04/what-doctors-wish-their-patients-knew/index.view=subscriber.htm.
- 21.Markle Foundation, Policies in practice: The download capability, http://www.markle.org/health/publications-briefs-health/1198-policies-practice-download-capability, 2010.
- 22.Markle Foundation, The Personal Health Working Group: Final report, http://www.policyarchive.org/collections/markle/index?section=5&id=15473, 2003.
- 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
- 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
- 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.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.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.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.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.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.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.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.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.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.Chase, D., Why Google Health really failed - It’s about the money, http://techcrunch.com/2011/06/26/why-google-really-failed-money/.