A Research Agenda for Personal Health Records (PHRs)

Journal of the American Medical Informatics Association

Volumn 15, Issue 6, 2008, Pages 729-736

  Kaelber, David C ^a,b,c,d,e   Jha, Ashish K ^d,e,f,g   Johnston, Douglas ^a,b   Middleton, Blackford ^a,b,d,f,g   Bates, David W ^a,b,c,d,f,g  

^a PARTNERS HEALTHCARE   (United States)

^b Center for Information Technology Leadership   (United States)

^c Center for Quality and Value   (United States)

^d BRIGHAM AND WOMEN S HOSPITAL   (United States)

^e VA BOSTON HEALTHCARE SYSTEM   (United States)

^f HARVARD MEDICAL SCHOOL   (United States)

^g HARVARD SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ELECTRONIC MEDICAL RECORD; FUNDING; HEALTH CARE COST; HEALTH CARE QUALITY; PRIVACY;

ATTITUDE TO HEALTH; CONFIDENTIALITY; HEALTH SERVICES RESEARCH; HUMANS; MEDICAL RECORDS; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; PATIENT ACCESS TO RECORDS; PATIENT PARTICIPATION;

EID: 54449095842     PISSN: 10675027     EISSN: None     Source Type: Journal    
DOI: 10.1197/jamia.M2547     Document Type: Article

References (133)

1. Few Patients Use or Have Access to Online Services for Communicating with their Doctors, but Most Would Like to (2006) Wall Street Journal/Harris Interactive
2. The Personal Health Working Group: Markle Foundation (2003)
3. My HealtheVet-The Gateway to Veteran Health and Wellness. 2007. http://www.myhealth.va.gov/ Accessed Dec 7, 2007
4. Knowles F. Patients may store health records online (2006) Chicago Sun-Times. 2006 December 25
5. Dossia. 2007. http://www.dossia.org Accessed Dec 7, 2007
6. HealthVault. 2007. http://www.healthvault.com/ Accessed Dec 12, 2007
7. Ralston J.D., Carrell D., Reid R., Anderson M., Moran M., and Hereford J. Patient web services integrated with a shared medical record: patient use and satisfaction. J Am Med Inform Assoc 14 6 (2007) 798-806 Nov-Dec
8. Grant R.W., Wald J.S., Poon E.G., et al. Design and implementation of a web-based patient portal linked to an ambulatory care electronic health record: patient gateway for diabetes collaborative care. Diabetes Technol Ther 8 5 (2006) 576-586
9. Ahern D.K., Kreslake J.M., and Phalen J.M. What is eHealth (6): perspectives on the evolution of eHealth research. J Med Internet Res 8 1 (2006) e4
10. Little D.R., Zapp J.A., Mullins H.C., Zuckerman A.E., Teasdale S., and Johnson K.B. Moving toward a United States strategic plan in primary care informatics: a White Paper of the Primary Care Informatics Working Group, American Medical Informatics Association. Inform Prim Care 11 2 (2003) 89-94
11. Personalized Healthcare Detailed Use Case March 21, 2008. 2008. Department of Health and Human Services. Office of the National Coordinator of Health Information Technology. http://www.hhs.gov/healthit/usecases/documents/PHCDetailed.pdf Accessed Apr 9, 2008
12. Information prescriptions (Ix): bringing internet-based health content into the treatment process; patients to your site. Internet Healthc Strateg 7 4 (2005) 4-8 Apr
13. New-age PHR comes with decision-support, multiple opportunities for DM. Dis Manag Advis 12 12 (2006) 140-142 Dec; 33
14. Ayana M., Pound P., Lampe F., and Ebrahim S. Improving stroke patients' care: a patient held record is not enough. BMC Health Serv Res 1 1 (2001) 1
15. Cornbleet M.A., Campbell P., Murray S., Stevenson M., and Bond S. Patient-held records in cancer and palliative care: a randomized, prospective trialt. Palliat Med 16 3 (2002) 205-212
16. Gysels M., Richardson A., and Higginson I.J. Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review. Health Expect 10 1 (2007) 75-91
17. Wang M., Lau C., Matsen III F.A., and Kim Y. Personal health information management system and its application in referral management. IEEE Trans Inf Technol Biomed 8 3 (2004) 287-297 Sep
18. Jones R., McConville J., Mason D., Macpherson L., Naven L., and McEwen J. Attitudes towards, and utility of, an integrated medical-dental patient-held record in primary care. Br J Gen Pract 49 442 (1999) 368-373 May
19. Ayana M., Pound P., and Ebrahim S. The views of therapists on the use of a patient-held record in the care of stroke patients. Clin Rehabil 12 4 (1998) 328-337 Aug
20. Kittler A.F., Carlson G.L., Harris C., et al. Primary care physician attitudes towards using a secure web-based portal designed to facilitate electronic communication with patients. Inform Prim Care 12 3 (2004) 129-138
21. Kittler A.F., Wald J.S., Volk L.A., et al. The role of primary care non-physician clinic staff in e-mail communication with patients. Int J Med Inform 73 4 (2004) 333-340 May
22. Jeffs D., and Harris M. The personal health record. Making it work better for general practitioners. Aust Fam Physician 22 8 (1993) 1417-1419 Aug; 21, 24-7
23. Group Health Presentation. Personal Health Records Conference 2006 (2006) Washington DC
24. Wald J. Personal Communication. Corporate Manager (2008), Patient Gateway, Partners IS, Wellesley, MA
25. Jeffs D., Nossar V., Bailey F., Smith W., and Chey T. Retention and use of personal health records: a population-based study. J Paediatr Child Health 30 3 (1994) 248-252 Jun
26. Wright A., and Sittig D.F. Security threat posed by USB-based personal health records. Ann Intern Med 146 4 (2007) 314-315 Feb
27. Tang P.C., Ash J.S., Bates D.W., Overhage J.M., and Sands D.Z. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 13 2 (2006) 121-126 Mar-Apr
28. Delbanco T., and Sands D.Z. Electrons in flight-e-mail between doctors and patients. N Engl J Med 350 17 (2004) 1705-1707
29. Bachman J.W. The patient-computer interview: a neglected tool that can aid the clinician. Mayo Clin Proc 78 1 (2003) 67-78
30. U.S. Support for Health Research and Development by Source of Funds from 1977 to 1993 (1993), National Institute of Health
31. Charting a Course for the 21st Century-NLM's Long Range Plan 2006-2016 (2006), National Library of Medicine
32. Personalized Healthcare Workgroup. 2006. http://www.hhs.gov/healthit/ahic/index.html Accessed June 11, 2007
33. Report on attitudes about personal health records. Internet Healthc Strateg 6 9 (2004) 10-11 Sep
34. Tang P.C., and Lansky D. The missing link: bridging the patient-provider health information gap. Health Aff (Millwood) 24 5 (2005) 1290-1295 Sep-Oct
35. Lober W.B., Zierler B., Herbaugh A.L., et al. Barriers to the use of a Personal Health Record by an Elderly Population. AMIA Annu Symp Proc (2006) 514-518
36. Kim E.H., Wang M., Lau C., and Kim Y. Application and evaluation of personal health information management system. Conf Proc IEEE Eng Med Biol Soc 5 (2004) 3159-3162
37. Kim E., Mayani A., Modi S., Kim Y., and Soh C. Evaluation of patient-centered electronic health record to overcome digital divide. Conf Proc IEEE Eng Med Biol Soc 2 (2005) 1091-1094
38. Liaw S.T. Patient and general practitioner perceptions of patient-held health records. Fam Pract 10 4 (1993) 406-415 Dec
39. Liaw S.T., Radford A.J., and Maddocks I. The impact of a computer generated patient held health record. Aust Fam Physician 27 Suppl 1 (1998) S39-S43
40. Liaw T., Lawrence M., and Rendell J. The effect of a computer-generated patient-held medical record summary and/or a written personal health record on patients' attitudes, knowledge and behaviour concerning health promotion. Fam Pract 13 3 (1996) 289-293 Jun
41. Denton I.C. Will patients use electronic personal health records?. Responses from a real-life experience. J Healthc Inf Manag 15 3 (2001) 251-259 Fall
42. Sprague L. Personal health records: the people's choice?. NHPF Issue Brief 30 820 (2006) 1-3
43. Tobacman J.K., and Nolan P. Utilization of a personal health record in a general medicine clinic. J Gen Intern Med 11 6 (1996) 370-372
44. Halamka J., Mandl K.D., and Tang P. Early Experiences with Personal Health Records. J Am Med Inform Assoc (2007) Oct 18
45. Cooke T., Watt D., Wertzler W., and Quan H. Patient expectations of emergency department care: phase II-a cross-sectional survey. Cjem 8 3 (2006) 148-157 May
46. Morrissey J. What does the public think?. For consumers to adopt PHRs, they need reasons that hit home. J Ahima 76 10 (2005) 42-44 Nov-Dec
47. Smith C.P. Helping consumers manage their PHRs. J Ahima 77 3 (2006) 50-51 Mar; 3; quiz 7-8
48. Moen A., and Brennan P.F. 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 (2005) 648-656 Nov-Dec
49. Mandl K.D., Simons W.W., Crawford W.C., and Abbett J.M. Indivo: a personally controlled health record for health information exchange and communication. BMC Med Inform Decis Mak 7 (2007) 25
50. Rubel P., Fayn J., Nollo G., et al. Toward personal eHealth in cardiology. Results from the EPI-MEDICS telemedicine project. J Electrocardiol 38 4 Suppl (2005) 100-106 Oct
51. Lee M., Delaney C., and Moorhead S. Building a personal health record from nursing perspective. Stud Health Technol Inform 122 (2006) 25-29
52. Wuerdeman L., Volk L., Pizziferri L., et al. How accurate is information that patients contribute to their Electronic Health Record?. AMIA Annu Symp Proc (2005) 834-838
53. Slaughter L., Ruland C., and Rotegard A.K. Mapping cancer patients' symptoms to UMLS concepts. AMIA Annu Symp Proc (2005) 699-703
54. Tobacman J.K., Kissinger P., Wells M., et al. Implementation of personal health records by case managers in a VAMC general medicine clinic. Patient Educ Couns 54 1 (2004) 27-33 Jul
55. Kim M.I., and Johnson K.B. Patient entry of information: evaluation of user interfaces. J Med Internet Res 6 2 (2004) e13 May
56. Kim M.I., and Johnson K.B. Personal health records: evaluation of functionality and utility. J Am Med Inform Assoc 9 2 (2002) 171-180 Mar-Apr
57. Dorr D., Bonner L.M., Cohen A.N., et al. Informatics Systems to Promote Improved Care for Chronic Illness: A Literature Review. J Am Med Inform Assoc 14 2 (2007) 156-163 March-April
58. Kimmel Z., Greenes R.A., and Liederman E. Personal health records. J Med Pract Manage 21 3 (2005) 147-152 Nov-Dec
59. Hess R., Bryce C.L., Paone S., et al. Exploring challenges and potentials of personal health records in diabetes self-management: implementation and initial assessment. Telemed J E Health 13 5 (2007) 509-517 Oct
60. The value of personal health records. A joint position statement for consumers of healthcare. J Ahima 77 9 (2006) 24 Oct
61. Ball M.J., and Gold J. Banking on health: Personal records and information exchange. J Healthc Inf Manag 20 2 (2006) 71-83 Spring
62. Ball M.J., Smith C., and Bakalar R.S. Personal health records: empowering consumers. J Healthc Inf Manag 21 1 (2007) 76-86 Winter
63. Burrington-Brown J. The PHR effect. J Ahima 76 2 (2005) 58-59 Feb
64. Burrington-Brown J., and Friedman B. Educating the public about personal health records. J Ahima 76 9 (2005) 94-95 Oct
65. Rhoads J., and Metzger J. Personal health records: prospects and challenges for health plans. AHIP Cover 48 1 (2007) 50 Jan-Feb; 3
66. Reinke T. Rise of the PHR. Manag Care 16 1 (2007) 40-42 Jan
67. Neame R. Creating an infrastructure for the productive sharing of clinical information. Top Health Inf Manage 20 3 (2000) 85-91 Feb
68. Waegemann C.P. Closer to reality. Personal health records represent a step in the right direction for interoperability of healthcare IT systems and accessibility of patient data. Health Manag Technol 26 5 (2005) 16 May; 8
69. Lowes R. Personal health records: What's the status now?. Med Econ 83 4 (2006) TCP13-TCP14 Feb 17; TCP6
70. Clarke J.L., Meiris D.C., and Nash D.B. Electronic personal health records come of age. Am J Med Qual 21 3 Suppl (2006) 5S-15S May-Jun
71. 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 9 suppl (1998) 18-22 Pt 1
72. Iakovidis I. Towards personal health record: current situation, obstacles and trends in implementation of electronic healthcare record in Europe. Int J Med Inform 52 1-3 (1998) 105-115 Oct-Dec
73. Klein-Fedyshin M.S. Consumer Health Informatics-integrating patients, providers, and professionals online. Med Ref Serv Q 21 3 (2002) 35-50 Fall
74. Nobel J.J. Health plan sponsored personal health records: a tool for information driven quality improvement. AHIP Cover 46 6 (2005) 14-16 Nov-Dec, 8, 20-5
75. Sittig D.F. Personal health records on the internet: a snapshot of the pioneers at the end of the 20th Century. Int J Med Inform 65 1 (2002) 1-6 Apr
76. Hicks J. Advocating for the PHR: educator's work sets stage for the future. J Ahima 76 10 (2005) 88 Nov-Dec
77. Readers' perspective. Personal health records will be widely used within five years, supplanting the need for regional health information organizations. Health Data Manag 15 10 (2007) 8 Oct
78. PA partnership publishes IT recommendations. Healthcare Benchmarks Qual Improv 14 7 (2007) 81-83 Jul
79. The value of personal health records. A joint position statement for consumers of healthcare by the American Health Information Management Association and the American Medical Informatics Association. J Ahima 78 4 (2007) 22 Apr; 4
80. Abrahamsen C. From Pong to PHRs: advances in electronic record keeping. Nurs Manage 38 8 (2007) 20-21 Aug
81. Albright B. Prepping for PHRs. The growing trend of consumer empowerment includes the speedy rise of personal health records. Healthc Inform 24 2 (2007) 44 Feb; 6
82. Anderson H.J. Managed care plans push PHRs. Health Data Manag 15 10 (2007) 70 Oct, 2
83. Roop L. Technology. Big business charges ahead with personal health records. Hosp Health Netw 81 2 (2007) 17 Feb
84. Robeznieks A. Medicare to test PHRs. CMS will try 18-month pilot of Net-based records. Mod Healthc 37 26 (2007) 45 Jun
85. Robeznieks A. Getting personal. Legal liability, patient-data overload among issues making physicians uneasy over emergence of personal health records. Mod Healthc 37 21 (2007) 40-42 May
86. Pagliari C., Detmer D., and Singleton P. Potential of electronic personal health records. Bmj 335 7615 (2007) 330-333 Aug
87. Morales Rodriguez M., Casper G., and Brennan P.F. Patient-centered design. The potential of user-centered design in personal health records. J Ahima 78 4 (2007) 44-46 Apr; quiz 9-50
88. Lovis C. Sustainable health care systems. Findings from the section on sustainable health care systems. Methods Inf Med 46 Suppl 1 (2007) 19-21
89. Heubusch K. PHRs for the masses?. Consumers say they are interested in PHRs, but will they use them?. J Ahima 78 4 (2007) 34 Apr, 6
90. Greeg C., and Buck S.L. PHRs and physician practices. J Ahima 78 4 (2007) 71-75 Apr
91. Foxhall K. Now it's personal. Personal health records may be next on deck for the certification process. Healthc Inform 24 3 (2007) 30 Mar
92. Campbell R.J. Getting to the good information. PHRs and consumer health informatics. J Ahima 76 10 (2005) 46-49 Nov-Dec; quiz 51-2
93. Friedman R.H. Medicaid information technology architecture: an overview. Health Care Financ Rev 28 2 (2006) 1-9 Winter
94. Hagland M. Patient to partner. Will PHRs change the physician-patient relationship?. J Ahima 76 10 (2005) 38-40 Nov-Dec
95. Kun L.G. Homecare and disease prevention: reviewing a decade of evolution-privacy still the biggest hurdle. Conf Proc IEEE Eng Med Biol Soc 1 (2006) 4685
96. Pope J. Implementing EHRs requires a shift in thinking. PHRs-the building blocks of EHRs-may be the quickest path to the fulfillment of disease management. Health Manag Technol 27 6 (2006) 24 Jun, 6, 120
97. Baker D.B., and Masys D.R. PCASSO: a design for secure communication of personal health information via the internet. Int J Med Inform 54 2 (1999) 97-104 May
98. Blechner B., and Butera A. Health Insurance Portability and Accountability Act of 1996 (HIPAA): a provider's overview of new privacy regulations. Conn Med 66 2 (2002) 91-95 Feb
99. Srinivasan A. Keeping online personal records private: security and privacy considerations for Web-based PHR systems. J Ahima 77 1 (2006) 62-63 Jan, 8
100. McSherry B. Access to confidential medical records by courts and tribunals: the inapplicability of the doctrine of public interest immunity. J Law Med 14 1 (2006) 15-19 Aug
101. Conn J. Personal and (maybe) confidential. Questions over privacy, formats and definitions remain, but personal health records are on the way. Mod Healthc 36 27 (2006) 28-31 Jul 3-10
102. Harman L.B. HIPAA: a few years later. Online J Issues Nurs 10 2 (2005) 3 May
103. Sax U., Kohane I., and Mandl K.D. Wireless technology infrastructures for authentication of patients: PKI that rings. J Am Med Inform Assoc 12 3 (2005) 263-268 May-Jun
104. Wright A., and Sittig D.F. Encryption characteristics of two USB-based personal health record devices. J Am Med Inform Assoc 14 4 (2007) 397-399 Jul-Aug
105. Fullbrook S. Confidentiality. Part 3: Caldicott guardians and the control of data. Br J Nurs 16 16 (2007) 1008-1009 Sep 13-27
106. Computerisation of personal health records. Health Visit 51 6 (1978) 227 Jun
107. Recordkeeping systems: personal health records. J Am Med Rec Assoc 55 12 (1984) 42 Dec
108. Black D. Personal health records. J Med Ethics 18 1 (1992) 5-6 Mar
109. Mon D.T. PHR and EHR: what's the difference?. Records differ in span and legality. J Ahima 76 10 (2005) 60-61 Nov-Dec
110. Jossi F. Personal health records. Healthc Inform 23 2 (2006) 52 Feb, 4
111. Joshi P., Jones K.V., Hanson R.M., Alperstein G., and Fasher B. Personal health records. J Paediatr Child Health 29 5 (1993) 400-401 Oct
112. Endsley S., Kibbe D.C., Linares A., and Colorafi K. An introduction to personal health records. Fam Pract Manag 13 5 (2006) 57-62 May
113. Conn J. McKesson deal gives docs new PHR purveyor. Even with acquisition, RelayHealth exec vows vendor neutrality; others dubious. Mod Healthc 36 25 (2006) 54 Jun
114. Edlin M. Implementing personal health records. AHIP Cover 47 2 (2006) 14-16 Mar-Apr; 9
115. Gawthorn E.C. Personal health records (PHR). Aust Fam Physician 12 6 (1983) 466-468 Jun
116. Annual report of Council, 1985-1986: medical ethics. Br Med J (Clin Res Ed) 29 suppl (1986) 25-27 Mar; 292(6524)
117. Schlosser R.L., Krackardt B., Weber J., and Lerman E. [Impact of Preterm Infants of Less than 30 Weeks Gestation on the Prevalence of Special Education in School Beginners of a German City (Frankfurt/Main).]. Klin Padiatr (2007) Aug 21
118. Colang J.E., Killion J.B., and Vano E. Patient dose from CT: a literature review. Radiol Technol 79 1 (2007) 17-26 Sep-Oct
119. Einbinder J.S., and Bates D.W. Leveraging information technology to improve quality and safety. Methods Inf Med 46 Suppl 1 (2007) 22-29
120. Celebi S., Acik Y., Deveci S.E., et al. Epidemiological features of irritable bowel syndrome in a Turkish urban society. J Gastroenterol Hepatol 19 7 (2004) 738-743 Jul
121. Bashford Jr. J.A., Warren R.M., and Brown C.A. Use of speech-modulated noise adds strong "bottom-up" cues for phonemic restoration. Percept Psychophys 58 3 (1996) 342-350 Apr
122. Chen X., Yuan H., He W., Hu X., Lu H., and Li Y. Construction of a novel kind of expression plasmid by homologous recombination in Saccharomyces cerevisiae. Sci China C Life Sci 48 4 (2005) 330-336 Aug
123. Hellmann H., Davis J.M., and Thurau K. Blood pressure and indices of glomerular filtration area in hypertensive and normotensive Prague rats. Kidney Blood Press Res 23 6 (2000) 385-392
124. Kaye J.A., and Shulman L.N. Screening program for colorectal cancer: participation and follow up. HMO Pract 5 5 (1991) 168-170 Sep-Oct
125. Kim B.K., and Baldini M.G. Glycerol stress and platelet integrity. Cryobiology 23 3 (1986) 209-213 Jun
126. Maciulaitis R., and Janusonis T. [Irrational drug use in Siauliai, Panevezys and Utena counties of Lithuania]. Medicina (Kaunas) 39 Suppl 2 (2003) 9-18
127. Moore K.H., and Brouwer K.L. High-performance liquid chromatographic evaluation of the effect of heat treatment on trimethoprim and sulfamethoxazole stability in serum. Ther Drug Monit 17 4 (1995) 356-360 Aug
128. Neufeld L., Pelletier D.L., and Haas J.D. The timing hypothesis and body proportionality of the intra-uterine growth retarded infant. Am J Hum Biol 11 5 (1999) 638-646 Sep
129. O'Flaherty S., Jandera E., Llewellyn J., and Wall M. Personal health records: an evaluation. Arch Dis Child 62 11 (1987) 1152-1155 Nov
130. Shah S., Raman S., Moreira C., and MacIntyre C.R. School immunisation certificates-a review over time in a disadvantaged community. Aust N Z J Public Health 25 6 (2001) 534-538 Dec
131. Zeng-Treitler Q., Kim H., Goryachev S., Keselman A., Slaughter L., and Smith C.A. Text characteristics of clinical reports and their implications for the readability of personal health records. Medinfo 12 Pt 2 (2007) 1117-1121
132. Vogel V., Backer A., Heller J., and Kramer H.J. The renal endothelin system in the Prague hypertensive rat, a new model of spontaneous hypertension. Clin Sci (Lond) 97 1 (1999) 91-98 Jul
133. Smith N.L., and Maynard C. The burden of diabetes-associated cardiovascular hospitalizations in Veterans Administration (VA) and non-VA medical facilities. Diabetes Care 27 Suppl 2 (2004) B27-B32