Journal:The evolution, use, and effects of integrated personal health records: A narrative review

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Full article title The evolution, use, and effects of integrated personal health records: A narrative review
Journal electronic Journal of Health Informatics
Author(s) Zieth, Caroline R.; Chia, Lichun Rebecca; Roberts, Mark S.; Fischer, Gary S.; Clark, Sunday; Weimer, Melissa; Hess, Rachel
Author affiliation(s) Center for Research on Health Care, University of Pittsburgh; University of Pittsburgh School of Medicine;
Weil Cornell Medical College; University of Pittsburgh Graduate School of Public Health
Primary contact Caroline Zieth - Email: ziethcr@upmc.edu
Year published 2014
Volume and issue 8 (2)
Page(s) e17
DOI None
ISSN 1446-4381
Distribution license Creative Commons Attribution-NonCommercial-ShareAlike 3.0
Website http://www.ejhi.net/ojs/index.php/ejhi/article/view/247
This articles should note be considered complete until this message box has been removed. This is a work in progress.

Abstract

Objective: To present a summarized literature review of the evolution, use, and effects of Personal Health Records (PHRs).

Methods: Medline and PubMed were searched for ‘personal health records’. Seven hundred thirty-three references were initially screened resulting in 230 studies selected as relevant based on initial title and abstract review. After further review, a total of 52 articles provided relevant information and were included in this paper. These articles were reviewed by one author and grouped into the following categories: PHR evolution and adoption, patient user attitudes toward PHRs, patient reported barriers to use, and the role of PHRs in self-management.

Results: Eleven papers described evolution and adoption, 17 papers described PHR user attitudes, 10 papers described barriers to use, and 11 papers described PHR use in self-management. Three papers were not grouped into a category but were used to inform the Discussion. PHRs have evolved from patient-maintained paper health records to provider-linked electronic health records. Patients report enthusiasm for the potential of modern PHRs, yet few patients actually use an electronic PHR. Low patient adoption of PHRs is associated with poor interface design and low health and computer literacy on the part of patient users.

Conclusion: PHR systems that account for patient’s needs and skills can facilitate their adoption. Common barriers are avoidable when patients receive adequate guidance on useful features as well as technical support. When implemented effectively, PHRs can increase patient participation in health management, and improve patient-physician communication and health related decision making.

Keywords: Personal Health Records; Electronic Health Records; Electronic Medical Records

Introduction

Involving patients in their health care using information technology (IT) such as interoperable personal health records (PHRs) may increase healthcare efficiency and improve quality while reducing medical errors.[1] The idea behind a PHR has existed for decades.[2][3] Initially, PHRs were in the form of paper medical records created and maintained by patients and used to augment healthcare provided in person.[4] These records, compiled and stored on paper by patients and families, allowed individuals to preserve their complete medical history.[3] As IT evolved, patients and families began to electronically store many health-related documents, including clinical notes from different health care providers, laboratory test results, and medication prescription records, essentially creating electronic versions of paper PHRs.[3][4]

Early patient-initiated PHRs have evolved into a wide variety of computer-based applications that allow patients to securely store health-related information such as laboratory test results; these can be maintained solely by patients or by both patients and clinicians.[3][5] (****Temp move****)

These PHRs range from original, stand-alone applications where patients enter the majority of their medical information to those integrated into the clinical health record.[4] In beginning to create standards for PHRs, the Markle Foundation’s Connecting for Health Collaborative defined a PHR as “an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment".[6] Currently, an estimated 70 million insured patients have access to some form of electronic PHR and those who do not would like access.[7][8]

(****Temp move****) Currently, employers, healthcare providers, and third party organizations have deployed a variety of electronic PHRs differing in architecture and function.[9][10]

When integrated with provider-maintained electronic health records (EHRs), PHRs are electronically linked to clinical information in the EHRs, which are repositories of all electronically available patient medical information from multiple sources, and which are updated by health care providers.[11][12] With integrated PHRs, patients can view automatically populated medical information, such as laboratory test results.[4][9][11] They have advantages over stand-alone PHRs by allowing securely linked patient-provider communication outside traditional clinical encounters. Integrated PHRs provide a means to create a shared patient record through evolving features including patient-physician collaborative tools and interactive decision-making tools, personalized management tools for chronic conditions, integrated and linked health information resources, and patient-entered information.[3][4][11][13][14][15][16]

To inform healthcare decision-making, PHR development, and future research on clinical outcomes, this literature review summarizes the evolution, use, and effects of PHRs, with a focus on integrated PHRs. Four broad areas are address: (1) the characteristics of PHR use, including their evolution and adoption, (2) patient and provider attitudes toward PHRs, (3) barriers to PHR adoption and use, and (4) the effects of PHRs on patient management and outcomes.

Methods

Medline and PubMed were searched to identify English-language articles focused on PHRs and published between 1970 and 2011. Studies were included based on the content of titles and abstracts, removing those for which the abbreviation PHR did not stand for ‘personal health record’. Of the 733 retrieved references initially identified in the search, 230 studies were selected as relevant based on initial title and abstract. Two independent reviewers (LRC and RH) screened these and a single reviewer (CRZ) verified the studies contained information regarding PHR evolution, consumer attitudes, barriers to use, and/or self-management through in-depth investigation of study content. Information from the final 52 papers, representing both qualitative and quantitative studies, was placed into four main categories: (1) the characteristics of PHR use, including their evolution and adoption, (2) patient and provider attitudes toward PHRs, (3) barriers to PHR adoption and use, and (4) the effects of PHRs on patient management and outcomes. Papers could contribute information to multiple categories (Tables 1-3).

Results

Evolution and adoption of PHRs

Eleven papers described the evolution of PHRs and the settings in which they are used. Early examples of PHRs were paper-based and patient-maintained.[3] Use of paper-based PHRs has continued even after computerized information systems had become available. For example, parents have routinely collected their children’s basic medical information and tracked their child’s development and immunizations using baby books or have carried wallet cards containing basic personal medical data (i.e., emergency contacts, blood types and allergy information).[3][17] Patients continue to keep some paper records despite the rise of electronic PHRs.[18] Currently almost half (42%) of Americans keep some form of a PHR, defined in this article as any single place where medical information is kept, and the majority (87%) are paper-based.[19]


References

  1. ↑ US Department of Health and Human Services (June 2008). "The ONC-Coordinated Federal Health Information Technology Strategic Plan: 2008U2012" (PDF). https://www.healthit.gov/sites/default/files/hit-strategic-plan-summary-508-2.pdf. 
  2. ↑ US Department of Health and Human Services (February 2006). "Personal Health Records and Personal Health Record Systems: A Report and Recommendation from the National Committee on Vital and Health Statistics" (PDF). http://www.ncvhs.hhs.gov/wp-content/uploads/2014/05/0602nhiirpt.pdf. 
  3. ↑ 3.0 3.1 3.2 3.3 3.4 3.5 3.6 Detmer, D.; Bloomrosen, M.; Raymond, B.; Tang, P. (2008). "Integrated personal health records: transformative tools for consumer-centric care". BioMed Central Medical Informatics and Decision Making 8: 45. doi:10.1186/1472-6947-8-45. PMC PMC2596104. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2596104. 
  4. ↑ 4.0 4.1 4.2 4.3 4.4 Tang, P.C.; Ash, J.S.; Bates, D.W.; Overhage, J.M.; Sands, D.Z. (2006). "Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption". Journal of the American Medical Informatics Association 13 (2): 121-126. doi:10.1197/jamia.M2025. PMC PMC1447551. PMID 16357345. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447551. 
  5. ↑ Gearon, C. (June 2007). "Perspectives on the future of personal health records" (PDF). California HealthCare Foundation. http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/P/PDF%20PHRPerspectives.pdf. 
  6. ↑ Markle Foundation (1 July 2003). "Connecting for Health: A Public-Private Collaborative" (PDF). p. 14. http://www.policyarchive.org/handle/10207/bitstreams/15473.pdf. 
  7. ↑ Kaelber, D.C.; Jha, A.K.; Johnston, D.; Middleton, B.; Bates, D.W. (2008). "A research agenda for personal health records (PHRs)". Journal of the American Medical Informatics Association 15 (6): 729-736. doi:10.1197/jamia.M2547. PMC PMC2585530. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585530. 
  8. ↑ Harris Interactive (22 September 2006). "Few patients use or have access to online services for communicating with their doctors, but most would like to". The Wall Street Journal Online 5 (16): 1–7. http://www.prnewswire.com/news-releases/few-patients-use-or-have-access-to-online-services-for-communicating-with-their-doctors-but-most-would-like-to-57121547.html. 
  9. ↑ 9.0 9.1 Kaelber, D.; Pan, E.C. (2008). "The value of personal health records (PHR) systems". American Medical Informatics Association Annual Symposium Proceedings 2008: 343–347. PMC PMC2655982. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655982. 
  10. ↑ Sunyaev, A.; Kaletsch, A.; Krcmar, H. (January 2010). "Comparative evaluation of Google Health API vs. Microsoft Healthvault API" (PDF). Proceedings of the Third International Conference on Health Informatics 2010: 195–201. Archived from the original on 11 May 2013. https://web.archive.org/web/20130511163734/http://www.alexander-kaletsch.de/downloads/api.pdf. 
  11. ↑ 11.0 11.1 11.2 Carrión, I.; Fernández-Alemán, J.L.; Jayne, C.; Palmer-Brown, D.; Toval, A.; Carrillo-de-Gea, J.M. (January 2012). "Evaluation and neuronal network-based classification of the PHRs privacy policies". Proceedings of the 45th Hawaii International Conference on System Sciences 2012: 2840-2849. doi:10.1109/HICSS.2012.257. 
  12. ↑ Stakic, S.B.; Teodosijevic, N. (August 2010). "Agreement based distribution of responsibilities in national electronic health record systems". Proceedings of the IEEE International Conference on Social Computing / IEEE International Conference on Privacy, Security, Risk and Trust 2010: 607-614. doi:10.1109/SocialCom.2010.95. 
  13. ↑ Krist, A.H.; Woolf, S.H.; Rothemich, S.F.; Johnson, R.E.; Peele, J.E.; Cunningham, T.D.; Longo, D.R.; Bello, G.A.; Matzke, G.R. (2012). "Interactive preventive health record to enhance delivery of recommended care: a randomized trial". Annals of Family Medicine 10 (4): 312-9. doi:10.1370/afm.1383. PMC PMC3392290. PMID 22778119. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3392290. 
  14. ↑ Pagliari, C.; Detmer, D.; Singleton, P. (2007). "Potential of electronic personal health records". British Medical Journal 335 (7615): 330-333. doi:10.1136/bmj.39279.482963.AD. PMC PMC1949437. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1949437. 
  15. ↑ Ralston, J.D.; Hirsch, I.B.; Hoath, J.; Mullen, M.; Cheadle, A.; Goldberg, H.I. (2009). "Web-based collaborative care for type 2 diabetes: a pilot randomized trial". Diabetes Care 32 (2): 234-9. doi:10.2337/dc08-1220. PMC PMC2628685. PMID 19017773. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628685. 
  16. ↑ Witry, M.J.; Doucette, W.R.; Daly, J.M.; Levy, B.T.; Chrischilles, E.A. (2010). "Family physician perceptions of personal health records". Perspectives in Health Information Management 7 (Winter): 1d. PMC PMC2805556. PMID 20697465. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805556. 
  17. ↑ Tobacman, J.; Nolan, P. (1996). "Utilization of a personal health record in a general medicine clinic". Journal of General Internal Medicine 11 (6): 370-372. PMID 8803745. 
  18. ↑ Archer, N.; Fevrier-Thomas, U.; Lokker, C.; McKibbon, K.A.; Straus, S.E. (2011). "Personal health records: a scoping review". Journal of the American Medical Informatics Association 18 (4): 515-522. doi:10.1136/amiajnl-2011-000105. PMC PMC3128401. PMID 21672914. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3128401. 
  19. ↑ Taylor, H. (2004). "Two in five adults keep personal or family health records and almost everybody thinks this is a good idea: electronic health records likely to grow rapidly". Health Care News 4 (13). http://www.prnewswire.com/news-releases/two-in-five-adults-keep-personal-or-family-health-records-and-almost-everybody-thinks-this-is-a-good-idea-71581677.html. 

Notes

This presentation is faithful to the original, with only a few minor changes to presentation. Some references didn't include links to PDF files. Additionally, all journal references did not list DOIs and PubMed IDs; these have been added to the references to make them more useful. Finally, in the PDF a couple of references were placed out of order by appearance, particularly references nine and ten in the introduction. Because the wiki automatically assigns reference numbers based on order of appearance, the reference numbers here ultimately do not match up with those in the original paper. This was unavoidable.

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