Personal health record

From Wikipedia, the free encyclopedia

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. A good example is *Global Lifeguard.

Contents 1 Definition 2 PHR Platforms 3 Sponsors of PHRs 4 Research on PHRs 5 Bibliography 6 References

[edit] 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;^[1] 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.^{[2] [3] [4]} 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.

[edit] 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.

[edit] Sponsors of PHRs

Health care consumers may obtain a PHR from various sponsoring organizations. Some PHRs are marketing 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.

[edit] 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.^[5]

[edit] Bibliography

Books

1. 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. [No authors listed]. Computerisation of personal health records. Health Visit. Jun 1978. 51(6); 227. Medline
2. [No authors listed]. Recordkeeping systems: personal health records. J Am Med Rec Assoc. Dec 1984. 55(12); 42. Medline
3. [No authors listed]. [Personal medical records and identification card, synchronized information systems]. Rev Infirm. Dec 2004. 106; 45-6. Medline
4. [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. Medline
5. [No authors listed]. Report on attitudes about personal health records. Internet Healthc Strateg. May 2005. 6(9); 10-11. Medline
6. [No authors listed]. New-age PHR comes with decision-support, multiple opportunities for DM. Dis Manag Advis. Dec 2006. 12(12); 140-2. Medline
7. Adler KG. Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services. J Med Internet Res. Aug 2006. 8(4); e26.
8. AHIMA e-HIM Personal Health Record Work Group. Defining the personal health record. J AHIMA. Jun 2005. 76(6); 24-25.
9. AHIMA e-HIM Personal Health Record Work Group. Practice brief. The role of the personal health record in the EHR. J AHIMA. Jul 2005. 76(7); 64A-64D. Medline
10. American Health Information Management Association, American Medical Informatics Association. The value of personal health records. A joint position statement for consumers of healthcare. J AHIMA. Oct 2006. 77(9); 24.
11. Bakker A. Access to the EHR and access control at a moment in the past: a discussion of the need and an exploration of the consequences. Int J Med Info. Mar 2004. 73(3); 267-270.
12. Ball MJ, Gold J. Banking on health: personal records and information exchange. Journal of Healthcare Information Management. Apr 2006. 20(2); 71-83. Medline
13. Ball MJ, Smith C, Bakalar RS. Personal health records: empowering consumers. J Healthc Inf Manag. Winter 2007. 21(1); 76-86. Medline
14. Black D. Personal health records. J Med Ethics. Mar 1992. 18(1); 5-6. Medline
15. Burrington-Brown J, Friedman B. Educating the public about personal health records. J AHIMA. Oct 2005. 76(9); 94-5. Medline
16. Cimino JJ, Patel VL, Kushniruk AW. 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. Dec 2000. 68; 113-127.
17. Clarke JL, Meiris DC, Nash DB. Electronic personal health records come of age. American Journal of Medical Quality. May 2006. 21(3 suppl); 5S-15S. Medline
18. Conn J. Personal and (maybe) confidential. Questions over privacy, formats and definitions remain, but personal health records are on the way. Mod Healthc. Jul 2006. 36(27); 28-31.
19. Cooke T, Watt D, Wertzler W, Quan H. Patient expectations of emergency department care: phase II - a cross-sectional survey. CJEM. May 2006. 8(3); 148-57. Medline
20. D'Allessandro DM, Dosa NP. Empowering children and families with information technology. Arch Pediatr Adolesc. Oct 2001. 155(10); 1131-1136.
21. Denton IC. Will patients use electronic personal health records? Responses from a real-life experience. J Healthc Inf Manag. Sep 2001. 15(3); 251-9. Medline
22. Earnest MA, Ross SE, Wittevrongel L, Moore LA, Lin CT. Use of patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. Journal of American Medical Informatics Association. Sep 2004.
23. Edlin M. Implementing personal health records. AHIP Cover. Mar 2006. 47(2); 14-6,19.
24. Endsley S, Kibbe DC, Linares A, Colorafi K. An introduction to personal health records. Fam Pract Manag. May 2006. 13(5); 57-62.
25. Fowles JB, Kind AC, Craft C, Kind EA, Mandel JL, Adlis S. Patient's interest in reading their medical record. Archives of Internal Medicine. Apr 2004. 4; 793-800.
26. Gawthorn EC. Personal health records (PHR). Aust Fam Physician. Jun 1983. 12(6); 466-8.
27. Hassol A, Walker JM, Kidder D, Rokita K, Young D, Pierdon S, Deitz D, Kuck S, Ortiz E. Patient experiences and attitudes about access to a patient electronic healthcare record and linked Web messaging. Journal of Medical Informatics Association. Nov 2004. 11(6); 505-513.
28. Honeyman A, Cox B, Fisher B. Potential impacts of patient access to their electronic care records. Informatics in Primary Care. Jan 2005. 13; 55-60.
29. 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.
30. Jeffs D, Harris M. The personal health record. Making it work better for general practitioners. Aust Fam Physician. Aug 1993. 8; 1417-9, 1421, 1424-7.
31. Jeffs D, Nossar V, Bailey F, Smith W, Chey T. Retention and use of personal health records: a population-based study. J Paediatr Child Health. Jun 1994 30(3); 248-52.
32. Johnson S, Mayor P. A patient-held record for cancer patients from diagnosis onwards. International Journal of Pallative Nursing. Apr 2002. 8(4); 182-189.
33. Joshi P, Jones KV, Hanson RM, Alperstein G, Fasher B. Personal health records. J Paediatr Child Health. Oct 1993. 29(5); 400-1.
34. Jossi F. Personal health records. Healthc Inform. Feb 2006. 23(2); 52, 54.
35. Kardas G, Tunali ET. Design and implementation of a smart card based healthcare information system. Comput Methods Programs Biomed. Jan 2006. 81(1); 66-78.
36. 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.
37. Kim MI, Johnson KB. Personal health records: evaluation of functionality and utility. Journal of American Medical Informatics Association. Mar 2002. 9(2); 171-180.
38. Kim MI, Johnson KB. Patient entry of information: evaluation of user interfaces. J Med Internet Res. May 2004. 6(2); e13.
39. Kimmel Z, Greenes RA, Liederman E. Personal health records. J Med Pract Manage. Nov 2005. 21(3); 147-52.
40. Klein-Fedyshin MS. Consumer health informatics--integrating patients, providers, and professionals online. Med Ref Serv Q. Sep 2002. 21(3); 35-50.
41. 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).
42. Lin CT, Wittevrongel L, Moore L, Beaty BL, Ross SE. An Internet-based patient-provider communication system: randomized controlled trial. Journal of Medical Internet Research. Aug 2005. 7(4); e47.
43. 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.
44. Lowes R. Personal health records: What's the status now? Med Econ. Feb 2006. 83(4); TCP 13-4,16.
45. Masys D, Baker D, Butros A, Cowles K. Giving patients access to their medical records via the Internet. Journal of American Medical Informatics Association. Mar 2002. 9(2); 181-191.
46. McSherry B. Access to confidential medical records by courts and tribunals: the inapplicability of the doctrine of public interest immunity. J Law Med. Aug 2006. 14(1); 15-9.
47. Moen A, Brennan PF. Health@Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. JAMIA. Nov 2005. 12(6); 648-56.
48. Morrissey J. But what does the public think?: For consumers to adopt PHRs, they need reasons that hit home. Journal of AHIMA. Nov 2005. 76(10); 42-44.
49. Neame R. Creating an infrastructure for the productive sharing of clinical information. Top Health Inf Manage. Feb 2000. 20(3); 85-91.
50. Nobel JJ. Health plan sponsored personal health records: a tool for information driven quality improvement. AHIP Cover. Nov 2005. 46(6); 14-6,18,20-5.
51. O'Flaherty S, Jandera E, Llewellyn J, Wall M. Personal health records: an evaluation. Arch Dis Child. Nov 1987. 62(11); 1152-5.
52. Odom-Wesley B. Envisioning the personal medical record. J AHIMA. Nov 2000. 71(10); 39-45.
53. Pyper C, Amery J, Watson M, Crook C, Thomas B. Patients' access to their online electronic health records. Journal of Telemedicine and Telecare. Jan 2002. 8(Suppl. 2); 103-105.
54. Pyper C, Amery J, Watson M, Crook C. Access to electronic health records in primary care - a survey of patients' views. Med Sci Monit. Nov 2004. 10(11); SR17-22.
55. Ralston JD, Revere D, Robins LS, Goldberg HI. Patients' experience with a diabetes support programme based on an interactive electronic medical record: qualitative study. British Medical Journal. May 2004. 328(7449); 1159.
56. Rhoads J, Metzger J. Personal health records: prospects and challenges for health plans. AHIP Cover. Jan-Feb 2007. 48(1); 50, 53.
57. Ross SE, Lin C. The effects of promoting patient access to medical records: a review. JAMIA. Mar 2003. 10(2); 129-138.
58. Ross SE, Moore LA, Earnest MA, Wittevrongel L, Lin C. Providing a Web-based online medical record with electronic communication capabilities to patients with congestive heart failure: randomized trial. Journal of Medical Internet Research. May 2004. 6(2); e12.
59. Ross SE, Todd J, Moore LA, Beaty BL, Wittevrongel L, Lin CT. Expectations of patients and physicians regarding patient-accessible medical records. Journal of Medical Internet Research. May 2005. 7(2); e13.
60. Sax U, Kohane I, Mandl KD. Wireless technology infrastructures for authentication of patients: PKI that rings. JAMIA. May 2005. 12(3); 263-8.
61. Schneider JH. Online personal medical records: Are they reliable for acute/critical care? Critical Care Medicine. Aug 2001. 29(8 suppl); N196-N201.
62. Schoenberg R, Safran C. Internet based repository of medical records that retains patient confidentiality. British Medical Journal. Nov 2000. 321; 1199-1203.
63. Sittig DF. Personal health records on the internet: a snapshot of the pioneers at the end of the 20th Century. Int J Med Inform. Apr 2002. 65(1); 1-6.
64. Sprague L. Personal health records: the people's choice? NHPF Issue Brief. Nov 2006. (820); 1-13.
65. 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.
66. Tang PC, Lansky D. The missing link: bridging the patient-provider health information gap. Health Affairs. Sep 2005. 24(5); 1290-1295.
67. 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.
68. 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.
69. 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.
70. Waegemann CP. Closer to reality. Health Management Technology. May 2005. 26(5); 16,18.
71. 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.
72. 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.
73. 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.
74. Wright A, Sittig DF. Security threat posed by USB-based personal health records. Ann Intern Med. Feb 2007. 146(4); 314-5.
75. 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.
76. 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.

Conference Proceedings

1. 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.
2. 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. Medline
3. 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.
4. Ross S, Lin CT. A randomized controlled trial of a patient accessible medical record. AMIA 2003 Symposium Proceedings. Sep 2003. 990.
5. 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.
6. 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

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.

[edit] References