Personal health record

A personal health record or PHR is typically a health record that is initiated and maintained by an individual. An ideal PHR would provide a complete and accurate summary of the health and medical history of an individual by gathering data from many sources and making this information accessible online to anyone who has the necessary electronic credentials to view the information.

Definition

The term “personal health record” is not new. The earliest mention of the term was in an article indexed by PubMed dated June 1978; however, search results from PubMed also reveal that most scientific articles written about PHRs have been published since 2000.

The PHR is an ill-defined concept that has been developing over several years. The term has been applied to both paper-based and computerized systems; however, current usage usually implies an electronic resource. In recent years, several formal definitions of the term have been proposed by various organizations. Although each definition is unique, most of the definitions agree that the PHR is a computerized application that stores an individual's personal health information.

It is important to note that PHRs are not the same as EHRs (electronic health records). The latter are software systems designed for use by health care providers. Like the data recorded in paper-based medical records, the data in EHRs are legally mandated notes on the care provided by clinicians to patients. There is no legal mandate that compels a consumer or patient to store her personal health information in a PHR.

PHRs can contain a diverse range of data but usually include information about:

• allergies and adverse drug reactions,
• medications (including dose and how often taken) including over the counter medications and herbal remedies,
• illnesses and hospitalizations,
• surgeries and other procedures,
• vaccinations,
• laboratory test results,
• family history,
• and observations of daily living (ODLs).

In addition to storing an individual's personal health information, some PHRs provide added-value services such as drug-drug interaction checking or electronic messaging between patients and providers.

PHR Platforms

One of the principle distinguishing features of a PHR is the platform by which it is delivered. The types of platforms include: paper, personal computers, the internet, and portable devices.

Paper-based PHRs

Personal health information is recorded and stored in paper format. Printed laboratory reports, copies of clinic notes, and health histories created by the individual may be parts of a paper-based PHR. This method is low cost, reliable, and accessible without the need for a computer or any other hardware.

Paper-based PHRs may be difficult to locate, update, and share with others. Paper-based PHRs are subject to physical loss and damage, such as can occur during a natural disaster. Paper records can also be printed from most electronic PHRs.

PC-based PHRs

Personal health information is recorded and stored in personal computer-based software that may have the capability to print, backup, encrypt, and import data from other sources such as a hospital laboratory. The most basic form of a PC-based PHR would be a health history created in a word-processing program. The health history created in this way can be printed, copied, and shared with anyone with a compatible word processor.

PHR software can provide more sophisticated features such as data encryption, data importation, and data sharing with health care providers. Some PHR products allow the copying of health records to a mass-storage device such as a CD-ROM, DVD, smart card, or USB flash drive.

PC-based PHRs are subject to physical loss and damage of the personal computer and the data that it contains.

Internet-based PHRs

Internet-based PHRs allow health information to be accessed and edited via a Web browser. They have the advantage of being accessible from any location with an Internet connection with a suitable Web browser. By using the Internet, the PHR is enabled to be interactive, and to evolve with medical literature and the medical history of the patient and his or her family. While some Internet based serve primarily as a ubiquitously accessible repository, others attempt to become the primary personal medical resource with up to date medical information.

The data in an Internet-based PHR is stored on a remote server, i.e. not on the users local machine. This implies that the data is generally more available and more likely to have robust backup procedures protecting the data. Because more health data is stored it make it a more attractive target for unauthorized access.

Mobile SmartPhone-based PHRs

Mobile Personal health information is recorded and stored in personal mobile Smart Phone-based application that may have the capability to print, backup, encrypt, and import data from other sources such as a laboratory, clinic's Electronic Health Record or Web based PHRs. Health history such as medications, immunizations and allergies may be stored in the application.

Examples of services that offer a mobile PHR solution in combination with an internet based profiles or platforms are World Medical Card and AlertHey.

Portable-Storage PHRs

Personal health information is recorded and stored on a portable-storage device such as a CDROM, DVD, smart card, USB flash drive or SmartPhones, such as the iPhone or Android Phone. Some portable-storage PHRs provide features such as history editing, data encryption, data importation, and data sharing with health care providers.

Portable-storage PHRs are subject to physical loss and damage of the storage device. One of the disadvantages of portable-storage PHRs is that many computers at physician offices and hospitals cannot read and update these PHRs. However,the new generation portable personal health record manager can be used as a free standing application without the need for specialized software.

One example of a portable-storage PHR is the LifeGuard30 device.

Sponsors of PHRs

PHR programs are structured in the same basic way a consumer credit report is structured, in that consumers may obtain a PHR from various sponsoring organizations. Some PHRs are marketed directly to the consumer by the product vendor. The direct-to-consumer PHRs often require the consumer to pay a fee for registering a new account. Other PHRs are offered by health care organizations such as hospitals. Frequently, these hospital-based PHRs are integrated with other information systems owned by the health care delivery organization such as its EHR or laboratory information systems. Recently, PHRs are being offered to people by employers and health insurance companies, however it is unclear if the PHR is transportable or transferable if a person switches jobs or insurance companies.

EHRs, PHRs, Patient Portals and UHRs

The terms electronic health records, personal health records, and patient portals are not always used correctly. The generally agreed upon definition of these terms relates mainly to the ownership of the data. Strictly speaking the data is owned by the patient. A patient can, at any time, request their data. Electronic health records and electronic medical records are typically those data created by and for health professionals in the course of providing care. The data is about the patient but the data resides in a health care provider's system. The patient portal is typically defined as a view into the electronic medical records. In addition ancillary functions that support a health care provider's interaction with a patient are also found in those systems e.g. prescription refill requests, appointment requests, electronic case management, etc. Finally PHRs are data that resides with the patient, in a system of a patient's choosing. This data may have been exported directly from an EMR, but the point is it now resides in a location of the patient's choosing. Access to that information is controlled entirely by the patient.

PHRs gained notoriety at the national policy level in April 2009 when the The Boston Globe ran a front page article about "e-Patient_Dave" deBronkart's attempt to move his data from his hospital's patient portal to the Google Health PHR. As described in a 3300 word blog post, the transferred data contained much erroneous information: a false medication warning, exaggerated diagnoses, and conditions he'd never had. In addition, the system failed to transfer existing information such as laboratory results, radiology reports and allergies. The problem was that the patient portal had not transferred clinical data, it had transferred insurance billing codes.

Ironically, the blog post made clear that insurance data would also be unacceptable for use in populating EHRs.

A new concept being discussed (as of March 2010) is the UHR or "universal health record", which would be a patient-centered and patient-controlled body of information that could be shared in a granular way with particular health care providers at the patient's discretion in support of the patient's work with health care providers. This project would enlist open source contributions and enhancements from developers, with particular emphasis on supporting patient expectations of privacy and responsible patient control of private health information (PHI). It is anticipated that effective implementation of one or more "open source" approaches to the UHR would benefit both providers and patients ("Some of us are sometimes providers - All of us are sometimes patients...") including providing more cost-effective solutions to currently difficult problems including entry/verification/update of personal health data, enabling responsible patient-controlled granular release of PHI, and supporting interoperability and effective collaboration of patients and physicians across disparate EHR/PHR platforms.

Projects Related to PHRs

Project HealthDesign, with its National Program Office at the University of Wisconsin-Madison, aims to rethink the power of Personal Health Records. It is sponsored by the Pioneer porfolio of the Robert Wood Johnson Foundation with additional funding from the California Health Care Foundation.

Bibliography

Books

1. Agarwal R, Angst CM. Technology-enabled transformations in U.S. health care: early findings on personal health records and individual use,” In Galletta G, Zhang P, (Eds.), Human-Computer Interaction and Management Information Systems: Applications (Vol. 5). Armonk, NY: M.E. Sharpe, Inc., pp. 357–378. 2006.
2. Lewis D, Eysenbach G, Kukafka R, Stavri PZ, Jimison H. Consumer health informatics: informing consumers and improving health care. New York: Springer. 2005.

Journal Articles

1. The benefits of an internet based personal health record versus a paper based personal health record is expected to grow rapidly within the next three years. See interview with CEO, Glen Tullman of Allscripts http://www.ehrtv.com/allscripts-glen-tullman-mar-2010/
4. "Concepts of the Health Vault".  1999 Paper by Tom Munnecke describing an architecture for the Personal Health Record
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12. Adler KG (2006). "Web portals in primary care: an evaluation of patient readiness and willingness to pay for online services". J Med Internet Res. 8 (4): e26. doi:10.2196/jmir.8.4.e26. PMC 1794005 Freely accessible. PMID 17213045. 
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20. Ball MJ, Gold J (2006). "Banking on health: Personal records and information exchange". Journal of healthcare information management : JHIM. 20 (2): 71–83. PMID 16669591. 
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25. Clarke JL, Meiris DC, Nash DB (2006). "Electronic personal health records come of age". American Journal of Medical Quality. 21 (3 Suppl): 5S–15S. doi:10.1177/1062860606287642. PMID 16621927. CS1 maint: Multiple names: authors list (link)
26. Conn J (2006). "Personal and (maybe) confidential. Questions over privacy, formats and definitions remain, but personal health records are on the way". Mod Healthc. 36 (27): 28–31. PMID 16898550. 
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32. Einbinder JS, Bates DW (2007). "Leveraging information technology to improve quality and safety". Yearbook of medical informatics: 22–9. PMID 17700900. 
36. Friedman RH (2006). "Medicaid information technology architecture: an overview". Health Care Financ Rev. 28 (2): 1–9. PMID 17427840. 
38. Greene J (2007). "The personal health record: a key to improving health care for seniors". AHIP Coverage. 48 (5): 46–8, 51–2, 55. PMID 17941574. 
39. Halamka JD, Mandl KD, Tang PC (2008). "Early experiences with personal health records". J Am Med Inform Assoc. 15 (1): 1–7. doi:10.1197/jamia.M2562. PMC 2274878 Freely accessible. PMID 17947615. CS1 maint: Multiple names: authors list (link)
42. Honeyman A, Cox B, Fisher B (2005). "Potential impacts of patient access to their electronic care records". Informatics in Primary Care. 13 (1): 55–60. PMID 15949176. CS1 maint: Multiple names: authors list (link)
43. Iakovidis I. Towards personal health record: current situation, obstacles and trends in implementation of electronic healthcare record in Europe. Int J Med Info. Oct 1998. 52(1-3); 105-15.
50. Kim E, Mayani A, Modi S, Kim Y, Soh C. Evaluation of patient-centered electronic health record to overcome digital divide. Conf Proc IEEE Eng Med Biol Soc. 2005. 2;593-6.
54. Klein-Fedyshin MS (2002). "Consumer Health Informatics--integrating patients, providers, and professionals online". Med Ref Serv Q. 21 (3): 35–50. doi:10.1300/J115v21n03_03. PMID 12238015. 
55. Kupchunas WR (2007). "Personal health record: new opportunity for patient education". Orthop Nurs. 26 (3): 185–91; quiz 192–3. doi:10.1097/01.NOR.0000276971.86937.c4. PMID 17538475. 
56. Kun LG. Homecare and disease prevention: reviewing a decade of evolution - privacy still the biggest hurdle. Conf Proc IEEE Eng Med Biol Soc. 2006;1:4685. Medline
57. Lafky DB, Tulu B, Horan TA. A user-driven approach to personal health records. Communications of the Association for Information Systems. Jun 2006. 17(46).
60. Lober WB, Zierler B, Herbaugh AL, Shinstrom SE, Stolyar A, Kim EH, Kim Y. Barriers to the use of a Personal Health Record by an Elderly Population. AMIA Annu Symp Proc. 2006. 514-8.
62. Lu SC (2007). "CCR exchange: building a patient-driven web-based healthcare community around an emerging personal health record standard". Stud Health Technol Inform. 127: 58–64. PMID 17901599. 
65. Moen A, Brennan PF (2005). "Health@Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations". J Am Med Inform Assoc. 12 (6): 648–56. doi:10.1197/jamia.M1758. PMC 1294036 Freely accessible. PMID 16049230. 
74. Poon EG, Wald J, Schnipper JL; et al. (2007). "Empowering patients to improve the quality of their care: design and implementation of a shared health maintenance module in a US integrated healthcare delivery network". Studies in health technology and informatics. 129 (Pt 2): 1002–6. PMID 17911866. CS1 maint: Explicit use of et al. (link) CS1 maint: Multiple names: authors list (link)
75. Pyper C, Amery J, Watson M, Crook C, Thomas B (2002). "Patients' access to their online electronic health records". J Telemed Telecare. 8 Suppl 2: 103–5. doi:10.1258/135763302320302244. PMID 12217158. CS1 maint: Multiple names: authors list (link)
78. Rahul Shetty: Portable Digital Personal Health Record : To Bridge the Digital gap in Medical Information Storage of Individuals with Personal Health Records in Flash Drives. The Internet Journal of Health. 2007. Volume 5 Number 2.
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105. Wright A, Sittig DF (2007). "Encryption characteristics of two USB-based personal health record devices". J Am Med Inform Assoc. 14 (4): 397–9. doi:10.1197/jamia.M2352. PMC 2244899 Freely accessible. PMID 17460132. 
107. Zeng-Treitler Q, Kim H, Goryachev S, Keselman A, Slaughter L, Smith CA (2007). "Text characteristics of clinical reports and their implications for the readability of personal health records". Stud Health Technol Inform. 129 (Pt 2): 1117–21. PMID 17911889. CS1 maint: Multiple names: authors list (link)

Conference Proceedings

1. Angst CM, Agarwal, R, Downing, J. An empirical examination of the importance of defining the PHR for research and for practice,” Proceedings of the 41st Annual Hawaii International Conference on System Sciences. Jan 2008.
2. Cimino JJ, Li J, Mendoca EA, Sengupta S, Patel VL, Kuhniruk AW. An evaluation of patient access to their electronic medical records via the World Wide Web. AMIA Symposium. Sep 2000.
3. Dorr D, Bonner LM, Cohen AN; et al. (2007). "Informatics systems to promote improved care for chronic illness: a literature review". J Am Med Inform Assoc. 14 (2): 156–63. doi:10.1197/jamia.M2255. PMC 2213468 Freely accessible. PMID 17213491. CS1 maint: Explicit use of et al. (link) CS1 maint: Multiple names: authors list (link)
4. Iakovidis I. From electronic medical record to personal health records: present situation and trends in European Union in the area of electronic healthcare records. Medinfo. Sep 1998. 9(1 suppl); 18-22.
5. Ross S, Lin CT (2003). "A randomized controlled trial of a patient-accessible electronic medical record". AMIA Annu Symp Proc.: 990. PMC 1480093 Freely accessible. PMID 14728493. 
6. Stroetmann KA, Pieper M, Stroetmann VN. Understanding patients: participatory approaches for the user evaluation of vital data presentation. ACM Conference on Universal Usability; Proceedings of the 2003 Conference on Universal Usability . Nov 2003. 93-97.
7. Wuerdeman L, Volk L, Pizziferri L; et al. (2005). "How accurate is information that patients contribute to their Electronic Health Record?". AMIA Annu Symp Proc.: 834–8. PMC 1560697 Freely accessible. PMID 16779157. CS1 maint: Explicit use of et al. (link) CS1 maint: Multiple names: authors list (link)

Other

1. America’s Health Insurance Plans. Consumer and provider focus groups on PHR. Unpublished. Jan 2005.
2. Angst CM, Agarwal R, Downing J. An empirical examination of the importance of defining the PHR for research and for practice. Robert H. Smith School Research Paper. May 2006. RHS-06-011.
3. California Health Care Foundation. National consumer health privacy survey 2005. Nov 2005.
4. Canedy JT. SimplyWell PHR. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
5. Connecting for Health. Americans want benefits of personal health records Jun 2003.
6. Connecting for Health. The personal health working group. Jul 2003.
7. Connecting for Health. Connecting Americans to their Healthcare final report: working group on policies for electronic information sharing between doctors and patients. Jul 2004.
8. Connecting for Health. Connecting Americans to Their Health Care: A Common Framework for Networked Personal Health Information. Dec 2006.
9. Department of Health and Human Services. Standards for privacy of individually identifiable health information. Federal Register. Dec 2000. Billing Code 4150-05M; 82461-82829 (45 CFR Parts 160-164).
10. Detmer D, Steen E. Learning from abroad: lessons and questions on personal health records for national policy. AARP. Mar 2006.
11. Haslmaier EF. Health care information technology – getting the policy right. Web Memo – Heritage Foundation. Jun 2006. No. 1131.
12. Markle Foundation. Attitudes of Americans regarding personal health records and nationwide electronic health information exchange: key findings from two surveys of Americans. Oct 2005.
13. Miller RH, Sim I. Physicians' use of electronic medical records: barriers and solutions. California HealthCare Foundation. Mar 2004. 116-126.
14. Skewes JL. Shared Health, Inc. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
15. Taylor H. Two in five adults keep personal or family health records and almost everybody think this is a good idea. Harris Interactive. Aug 2004.

External links

• MyPHR - Directory of PHR products that are currently available on the market - sponsored by The American Health Information Management Association
• Video Interview of MIT Professor Peter Szolovitz about early developments of the Personal Health Recordhe:רשומה רפואית אישית