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, English-language article indexed by PubMed that mentions the term is 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,
• and family history.

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 PHR: 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. PC-based PHRs may be vulnerable to unauthorized access via Internet or other data connections. The encryption of personal health information is a valuable feature, as is a firewall.

Internet-Based PHR: Personal health information is accessed and edited via a Web browser. The data is stored on a remote server. Internet-based PHRs may have the capability to print information, backup data, import data from other information systems, and share information with health care providers.

Internet-based PHRs are subject to physical loss and damage of the Web server. Internet-based PHRs may be vulnerable to unauthorized access via Internet or other data connections. Internet-based PHRs have the advantage of being accessible from any location with an Internet connection with a suitable Web browser.

Portable-Storage PHR: Personal health information is recorded and stored on a portable-storage device such as a CDROM, DVD, smart card, or USB flash drive. 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.

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.

Research on PHRs

Numerous articles have been published in the health literature about personal health records; however, few of these articles describe studies that evaluated the benefits of PHRs. Thus, little evidence currently exists to verify the benefits of PHRs.

See also

• Health care
• Health informatics
• electronic health record

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.

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89. Smith SP, Barefield AC (2007). "Patients meet technology: the newest in patient-centered care initiatives". Health Care Manag (Frederick). 26 (4): 354–62. doi:10.1097/01.HCM.0000299254.29678.50. PMID 17992110. {{cite journal}}: Unknown parameter |doi_brokendate= ignored (|doi-broken-date= suggested) (help); Unknown parameter |month= ignored (help)
90. Sprague L (2006). "Personal health records: the people's choice?". NHPF Issue Brief. (820): 1–13. PMID 17146910. {{cite journal}}: Unknown parameter |month= ignored (help)
91. Smolij K, Dun K (2006). "Patient health information management: searching for the right model". Perspect Health Inf Manag. 3: 10. PMC 2047307. PMID 18066368. {{cite journal}}: Unknown parameter |month= ignored (help)
92. Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. Journal of Medical Informatics Association. Mar 2006. 13(2); 121-126.
93. Tang PC, Lansky D (2005). "The missing link: bridging the patient-provider health information gap". Health Affairs. 24 (5): 1290–5. doi:10.1377/hlthaff.24.5.1290. PMID 16162575. {{cite journal}}: Unknown parameter |month= ignored (help)
94. Tobacman JK, Kissinger P, Wells M; et al. (2004). "Implementation of personal health records by case managers in a VAMC general medicine clinic". Patient Educ Couns. 54 (1): 27–33. doi:10.1016/S0738-3991(03)00184-8. PMID 15210257. {{cite journal}}: Explicit use of et al. in: |author= (help); Unknown parameter |month= ignored (help)CS1 maint: multiple names: authors list (link)
95. Tracy CS, Dantas GC, Upshur RE (2004). "Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive". BMC Med Inform Decis Mak. 4: 13. doi:10.1186/1472-6947-4-13. PMC 518970. PMID 15361257. {{cite journal}}: Unknown parameter |month= ignored (help)CS1 maint: multiple names: authors list (link) CS1 maint: unflagged free DOI (link)
96. Ueckert F, Goerz M, Ataian M, Tessmann S, Prokosch HU (2003). "Empowerment of patients and communication with health care professionals through an electronic health record". Int J Med Inform. 70 (2–3): 99–108. doi:10.1016/S1386-5056(03)00052-2. PMID 12909161. {{cite journal}}: Unknown parameter |month= ignored (help)CS1 maint: multiple names: authors list (link)
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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. PMID 17213491. {{cite journal}}: Explicit use of et al. in: |author= (help)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. 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. PMID 16779157. {{cite journal}}: Explicit use of et al. in: |author= (help)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

• Video Interview of MIT Professor Peter Szolovitz about early developments of the Personal Health Record
• Health Care Informatics News