Personal health record

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; [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=248054&query_hl=2&itool=pubmed_DocSum (No authors listed)] Computerization of personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. Health Visit. 1978 June;51(6):227.] 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. [http://www.connectingforhealth.org/resources/final_phwg_report1.pdf Connecting for Health.] The Personal Health Working Group Final Report. July 1, 2003.] [http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_027539.hcsp?dDocName=bok1_027539 American Health Information Management Association.] The Role of the Personal Health Record in the EHR. July 25, 2005.] [http://www.ahip.org/content/default.aspx?docid=18330 America's Health Insurance Plans.] What are Personal Health Records (PHRs)? December 13, 2006.] 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. [http://www.jamia.org/cgi/content/full/13/2/121 Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ.] Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6.]

See also

* Health care
* Health informatics
* electronic health record

Bibliography

Books
# 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.
# 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

# [No authors listed] . Computerisation of personal health records. Health Visit. Jun 1978. 51(6); 227. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=248054&query_hl=10&itool=pubmed_DocSum Medline]
# [No authors listed] . Recordkeeping systems: personal health records. J Am Med Rec Assoc. Dec 1984. 55(12); 42. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=10310901&query_hl=10&itool=pubmed_DocSum Medline]
# [No authors listed] . [Personal medical records and identification card, synchronized information systems] . Rev Infirm. Dec 2004. 106; 45-6. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=15672518&query_hl=51&itool=pubmed_docsum Medline]
# [No authors listed] . Information prescriptions (Ix): bringing Internet-based health content into the treatment process; patients to your site. Internet Healthc Strateg. Apr 2005. 7(4); 4-8. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15929640&query_hl=2&itool=pubmed_docsum Medline]
# [No authors listed] . Report on attitudes about personal health records. Internet Healthc Strateg. May 2005. 6(9); 10-11. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15526437&query_hl=2&itool=pubmed_docsum Medline]
# [No authors listed] . New-age PHR comes with decision-support, multiple opportunities for DM. Dis Manag Advis. Dec 2006. 12(12); 140-2. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=17225631&query_hl=4&itool=pubmed_docsum Medline]
# [No authors listed] . Personal health record: new opportunity for patient education. Orthop Nurs. 2007 May-Jun;26(3):192-3. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17538476&query_hl=1&itool=pubmed_docsum Medline]
# [No authors listed] . Readers' perspective. Personal health records will be widely used within five years, supplanting the need for regional health information organizations. Health Data Manag. 2007 Oct;15(10):8. [http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17941305&itool=pubmed_DocSum Medline]
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# Smith SP, Barefield AC. Patients meet technology: the newest in patient-centered care initiatives. Health Care Manag (Frederick). 2007 Oct-Dec;26(4):354-62. [http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=HistorySearch&query_key=8&WebEnv=0ZfZ_27xrinAohnXfez4e62IOndnRrqjlUtLrYjTYjm8WROybovynp6z-OH9hDejs8QqjWsNY9dnss%401FBF115976704020_0002SID&WebEnvRq=1&db=pubmed Medline]
# Sprague L. Personal health records: the people's choice? NHPF Issue Brief. Nov 2006. (820); 1-13.
# Smolij K, Dun K. Patient health information management: searching for the right model. Perspect Health Inf Manag. 2006 Dec 12;3:10. [http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=HistorySearch&query_key=1&WebEnv=0y8jli44lIWIND5oaIGW-CBmdHobrdtwjgAP7gamMQ9bMEA8ot0pAScHWd%401FBF115976704020_0002SID&WebEnvRq=1&db=pubmed Medline]
# 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.
# Tang PC, Lansky D. The missing link: bridging the patient-provider health information gap. Health Affairs. Sep 2005. 24(5); 1290-1295.
# Tobacman JK, Kissinger P, Wells M, Prokuski J, Hoyer M, McPherson P, Wheeler J, Kron-Chalupa J, Parsons C, Weller P, Zimmerman B. Implementation of personal health records by case manager in a VAMC general medicine clinic. Patient Education and Counseling. Jul 2004. 54; 27-33.
# Tracy CS, Dantas GC, Upshur REG. Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive. BMC Medical Informatics and Decision Making. Sep 2004. 4; 13.
# Ueckert F, Goerz M, Ataian Ma, Tessmann S, Prokosch HU. Empowerment of patients and communication with health care professionals through an electronic health record. International Journal of Medical Informatics. Jul 2003. 70; 99-108.
# Waegemann CP. Closer to reality. Health Management Technology. May 2005. 26(5); 16,18.
# Weingart SN, Rind D, Tofias Z, Sands DZ. Who uses the patient Internet portal? The PatientSite experience. Journal of the American Medical Informatics Association. Jan 2006. 13(1); 91-5.
# Winkelman WJ, Leonard KJ. Overcoming structural constraints to patient utilization of electronic medical records: a critical review and proposal for an evaluation framework. Journal of American Medical Informatics Association. Mar 2004. 11(2); 151-161.
# Winkelman WJ, Leonard KJ, Rossos PG. 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. JAMIA. May 2005. 12; 306-314.
# Wright A, Sittig DF. Security threat posed by USB-based personal health records. Ann Intern Med. Feb 2007. 146(4); 314-5.
# Wolter J, Friedman B. Health records for the people: touring the benefits of the consumer-based personal health record. Journal of AHIMA. Nov 2005. 76(10); 28-32.
# Woolf SH, Krist AH, Johnson RE; Wilson DB, Rothemich SF, Norman GJ, Devers KJ. A practice-sponsored Web site to help patients pursue healthy behaviors: an ACORN study. Annals of Family Medicine. Mar 2006. 4(2); 371.
# Wright A, Sittig DF. Encryption Characteristics of Two USB-based Personal Health Record Devices. J Am Med Inform Assoc. Apr 2007. [epub] [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17460132&query_hl=3&itool=pubmed_docsum Medline]
# Wright A, Sittig DF. Security threat posed by USB-based personal health records. Ann Intern Med. 2007 Feb 20;146(4):314-5. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?orig_db=PubMed&db=PubMed&cmd=Search&term=%22Annals+of+internal+medicine%22%5BJour%5D+AND+2007%5Bpdat%5D+AND+Wright+A%5Bauthor%5D Medline]
# Zeng-Treitler Q, Kim H, Goryachev S, Keselman A, Slaughter L, Smith CA. Text characteristics of clinical reports and their implications for the readability of personal health records. Medinfo. 2007;12(Pt 2):1117-21. [http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Zeng-Treitler%20Q%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus Medline]

Conference Proceedings
# 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.
# 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.
# Dorr DA, Rowan B, Weed M, James B, Clayton P. Physicians' attitudes regarding patient access to electronic medical records. AMIA Symposium Proceedings. Nov 2003. 832. [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17213491&query_hl=2&itool=pubmed_docsum Medline]
# 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.
# Ross S, Lin CT. A randomized controlled trial of a patient accessible medical record. AMIA 2003 Symposium Proceedings. Sep 2003. 990.
# 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.
# Wuerdeman L, Volk L, Pizziferri L, Tsurikova R, Harris C, Feygin R, Epstein M, Meyers K, Wald JS, Lansky D, Bates DW. How accurate is information that patients contribute to their Electronic Health Record? AMIA Annu Symp Proc. Oct 2005. 834-8.

Other

# America’s Health Insurance Plans. Consumer and provider focus groups on PHR. Unpublished. Jan 2005.
# 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.
# California Health Care Foundation. National consumer health privacy survey 2005. Nov 2005.
# Canedy JT. SimplyWell PHR. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
# Connecting for Health. Americans want benefits of personal health records Jun 2003.
# Connecting for Health. The personal health working group. Jul 2003.
# Connecting for Health. Connecting Americans to their Healthcare final report: working group on policies for electronic information sharing between doctors and patients. Jul 2004.
# Connecting for Health. Connecting Americans to Their Health Care: A Common Framework for Networked Personal Health Information. Dec 2006.
# 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).
# Detmer D, Steen E. Learning from abroad: lessons and questions on personal health records for national policy. AARP. Mar 2006.
# Haslmaier EF. Health care information technology – getting the policy right. Web Memo – Heritage Foundation. Jun 2006. No. 1131.
# Markle Foundation. Attitudes of Americans regarding personal health records and nationwide electronic health information exchange: key findings from two surveys of Americans. Oct 2005.
# Miller RH, Sim I. Physicians' use of electronic medical records: barriers and solutions. California HealthCare Foundation. Mar 2004. 116-126.
# Skewes JL. Shared Health, Inc. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
# 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.

References

External links

* [http://www.myphr.com/resources/phr_search.asp MyPHR] - Directory of PHR products that are currently available on the market. The American Health Information Management Association sponsors this site.


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