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Revision as of 19:16, 28 July 2015

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 article should not 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]

As IT developed, patients began creating digital rather than paper records. Electronic PHRs evolved as patients started entering their health information into computer-based applications.[3][4] PHR functionality expanded to give patients the ability to view personal health information stored in their health care provider’s records.[4] Web-based PHRs originated in the emergency room and included online emergency medical records.[3][5] As practice and hospital-based EHRs evolved, they merged with PHRs and have become a major source of the information contained within integrated PHRs. Patients now have access to integrated PHRs through their insurers or healthcare providers; however, patient adoption of PHRs has lagged behind this access. Preliminary estimates from the National Ambulatory Medical Care Survey (NAMCS) found that 51% of physicians reported providing patients with access to an integrated or partially integrated PHR (i.e. an electronic medical record (EMR) or EHR linked PHR).[20] In a 2010 Consumer and Health Information Technology survey, however, only 7% of Americans reported having used either a stand-alone or an integrated PHR; a 2008 Markle Foundation survey reported fewer than 3%.[13][21][22][23]

Attitudes toward adoption and use of PHRs

Seventeen papers described patient or provider attitudes toward electronic and paper-based PHRs (Table 1). Patients are eager to use PHRs for their potential to improve health care delivery and outcomes but these positive attitudes do not translate into use.[24][25][26][27][28][29] Patients have mixed reasons for using or not using a PHR some of which are tied to their motivation to improve health outcomes and their relationship with their physician. Understanding patient motivation is important, particularly when designing and adopting PHRs.[24] Patients seek the ability to control access to their health information and believe they should have access.[30][31] Patients view integrated PHRs favorably with one report finding that 60% of patients indicate they would use an integrated PHR to look up test results and record their medication, and another survey finding that 75% of patients would communicate with physicians electronically if given the option.[8][13] Patients’ motivation to participate in their health care fosters their interest in viewing their PHRs and viewing PHRs influences patients’ care-related decision-making.[24][27][32] Diabetic patient users of an integrated PHR reported receiving care more quickly, and connecting with their doctor more easily.[15] An integrated PHR with features such as secure patient-physician messaging, medication history updating, and online requests for medication renewals was highly valued by elderly and disabled patients, patients with chronic conditions, and middle-aged female patients.[33][34][35] The ability to contact health care providers through secure messaging in an integrated PHR provided a feeling of security for patients in the Netherlands.[26] Patients want to view their records in order to have detailed information about their health, and those using an integrated PHR reported feeling more in control of their chronic conditions and a sense of illness-ownership, which motivated them to contribute information to their EHR.[24][27][36] Patients’ satisfaction with their physicians influenced their use of an integrated PHR. Patients expressing satisfaction with their patient-provider relationship were less likely to use an integrated PHR than patients expressing dissatisfaction.[25] Those expressing dissatisfaction viewed access to their PHR as a means of gaining knowledge or control over their health.

Five studies reported on ease of use for patients accessing an integrated PHR.[26][28][33][34][35] More than 60% of patients with head or neck cancer in the Netherlands and the majority of middle-aged adult patients in the United Kingdom found an integrated PHR easy to navigate.[26][28] Female patients who used an integrated PHR rated various functions easier to use than males.[33] Several studies, however, reported that patients did not maintain health information in their PHRs despite ease of use. Elderly patients found value in using an integrated PHR for updating medications, health problems, and lab test information, yet failed to annotate certain health information such as immunizations and laboratory test results, which the authors attributed to difficulties with the user interface of the integrated PHR.[34]

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 3.7 3.8 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 4.5 4.6 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. ↑ 5.0 5.1 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. ↑ 8.0 8.1 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. ↑ 13.0 13.1 13.2 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. ↑ 15.0 15.1 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. 
  20. ↑ Hsiao, C-J.; Hing, E.; Socey, T.C.; Cai, B. (December 2010). "Electronic medical record/electronic health record systems of office-based physicians: United States, 2009 and preliminary 2010 state estimates" (PDF). National Center for Health Statistics. http://www.cdc.gov/nchs/data/hestat/emr_ehr_09/emr_ehr_09.pdf. 
  21. ↑ Undem, T. (April 2010). "Consumers and health information technology: a national survey" (PDF). California HealthCare Foundation. pp. 40. http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/C/PDF%20ConsumersHealthInfoTechnologyNationalSurvey.pdf. 
  22. ↑ Markle Foundation (June 2008). "Americans overwhelmingly believe electronic personal health records could improve their health" (PDF). pp. 7. http://www.markle.org/sites/default/files/ResearchBrief-200806.pdf. 
  23. ↑ Tenforde, M.; Jain, A.; Hickner, J. (2011). "The value of personal health records for chronic disease management: what do we know?". Family Medicine 43 (5): 351-354. PMID 21557106. 
  24. ↑ 24.0 24.1 24.2 24.3 Winkelman, W.; Leonard, K.; Rossos, P. (2005). "Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness". Journal of the American Medical Informatics Association 12 (3): 306-314. PMC PMC1090462. PMID 15684128. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1090462. 
  25. ↑ 25.0 25.1 Zickmund, S.; Hess, R.; Bryce, C.; McTigue, K.; Olshansky, E.; Fitzgerald, K.; Fischer, G. (2007). "Interest in the use of computerized patient portals: role of the provider-patient relationship". Journal of General Internal Medicine 23 (S1): 20-26. doi:10.1007/s11606-007-0273-6. PMC PMC2338160. PMID 18095039. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2338160. 
  26. ↑ 26.0 26.1 26.2 26.3 Brink, J.; Moorman, P.; Boer, M.; Pruyn, J.; Verwoerd, C.; Bemmel, J. (2005). "Involving the patient: a prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care". International Journal of Medical Informatics 74 (10): 839-849. doi:10.1016/j.ijmedinf.2005.03.021. PMID 16043392. 
  27. ↑ 27.0 27.1 27.2 Jones, R.; McConville, J.; Mason, D.; Macpherson, L.; Navin, L.; McEwen, J. (1999). "Attitudes towards, and utility of, an integrated medical-dental patient-held record in primary care". British Journal of General Practice 49 (442): 368-73. PMC PMC1313422. PMID 10736887. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1313422. 
  28. ↑ 28.0 28.1 28.2 Pyper, C.; Amery, J.; Watson, M.; Crook, C. (2004). "Patients’ experiences when accessing their online electronic patient records in primary care". British Journal of General Practice 54 (498): 38-43. PMC PMC1314776. PMID 14965405. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314776. 
  29. ↑ Zayas-Caban, T.; Valdez, R. (2007). "Do patients understand how PHRs work?". American Medical Informatics Association Annual Symposium Proceedings 11: 1169. PMID 18694265. 
  30. ↑ Cox, B.; Thornewill, J. (2008). "The consumer’s view of the electronic health record: engaging patients in EHR adoption". Journal of Healthcare Information Management 22 (2): 43-7. PMID 19266994. 
  31. ↑ Bright, B. (29 November 2007). "Benefits of electronic health records seen as outweighing privacy risks". The Wall Street Journal. http://www.wsj.com/articles/SB119565244262500549. 
  32. ↑ Keselman, A.; Slaughter, L.; Smith, C.A.; Kim, H.; Divita, G.; Brown, A.; Tsai, C.; Zeng-Treitler, Q. (2007). "Towards consumer-friendly PHRs: patients’ experience with reviewing their health records". American Medical Informatics Association Annual Symposium Proceedings 2007: 399-403. PMC PMC2655877. PMID 18693866. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655877. 
  33. ↑ 33.0 33.1 33.2 Hassol, A.; Walker, J.; Kidder, D.; Rokita, K.; Young, D.; Pierdon, S.; Deitz, D.; Kuck, S.; Ortiz, E. (2004). "Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging". Journal of the American Medical Informatics Association 11 (6): 505–13. PMC PMC524631. PMID 15299001. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC524631. 
  34. ↑ 34.0 34.1 34.2 Kim, E.; Stolyar, A.; Lober, W.; Herbaugh, A.; Shinstrom, S.; Zierler, B.; Soh, C.; Kim, Y. (2007). "Usage patterns of a personal health record by elderly and disabled users". American Medical Informatics Association Annual Symposium Proceedings 2007: 409-13. PMC PMC2655817. PMID 18693868. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655817. 
  35. ↑ 35.0 35.1 Hess, R.; Bryce, C.; Paone, S.; Fischer, G.; McTigue, K.; Olshansky, E.; Zickmund, S.; Fitzgerald, K.; Siminerio, L. (2007). "Exploring challenges and potentials of personal health records in diabetes self-management: implementation and initial assessment". Telemedicine and e-Health 13 (5): 509-17. doi:10.1089/tmj.2006.0089. PMID 17999613. 
  36. ↑ Cimino, J.J.; Patel, V.L.; Kushniruk, A.W. (2002). "The patient clinical information system (PatCIS): technical solutions for and experience with giving patients access to their electronic medical records". International Journal of Medical Informatics 68 (1-3): 113-27. doi:10.1016/S1386-5056(02)00070-9. PMID 12467796. 

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 or were missing issue numbers. 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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