The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients.
BACKGROUND
Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.


METHODS
A quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.


RESULTS
A total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.


CONCLUSIONS
Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.
Wiljer
David
D
Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada. David.Wiljer@rmp.uhn.on.ca
Leonard
Kevin J
KJ
Urowitz
Sara
S
Apatu
Emma
E
Massey
Christine
C
Quartey
Naa Kwarley
NK
Catton
Pamela
P
D001007:Anxiety / Q000175:diagnosis*; D001943:Breast Neoplasms / Q000523:psychology*; D002170:Canada; D004522:Educational Status; D005260:Female; D055991:Health Records, Personal / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D015999:Multivariate Analysis; D009862:Online Systems; D033283:Patient Access to Records / Q000523:psychology*; D010358:Patient Participation; D011594:Psychometrics; D036301:Qualitative Research; D020377:Self Efficacy; D011795:Surveys and Questionnaires
J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
16357345
Healthc Q. 2007;10(3):76-8
17626550
Int J Med Inform. 2002 Dec 18;68(1-3):113-27
12467796
Inform Prim Care. 2005;13(1):55-60
15949176
Healthc Q. 2008;11(4):64-8, 2
18818532
J Clin Psychol. 1989 Jan;45(1):20-7
2925881
J Am Med Inform Assoc. 2002 Mar-Apr;9(2):171-80
11861632
J Healthc Inf Manag. 2010 Winter;24(1):57-63
20077927
Proc AMIA Symp. 2000;:151-5
11079863
Int J Comput Dent. 2002 Apr-Jul;5(2-3):125-32
12680044
BMC Med Inform Decis Mak. 2008 Jul 24;8:33
18652695
Med Inform Internet Med. 2007 Dec;32(4):305-14
18072007
Eff Clin Pract. 2001 Nov-Dec;4(6):256-62
11769298
Int J Med Inform. 2002 Apr;65(1):1-6
11904243
Stud Health Technol Inform. 2001;84(Pt 2):1440-4
11604964
Cancer Invest. 2008 Mar;26(2):202-7
18259953
J Paediatr Child Health. 2006 Sep;42(9):528-32
16925539
J Gen Intern Med. 2002 Mar;17(3):180-5
11929503
Ann Behav Med. 2008 Oct;36(2):141-8
18797979
Br J Cancer. 2000 Nov;83(10):1261-7
11044347
AMIA Annu Symp Proc. 2003;:990
14728493
Intern Med J. 2006 Nov;36(11):718-23
17040358
J Med Internet Res. 2004 May 14;6(2):e12
15249261
BMJ. 1999 Nov 6;319(7219):1241-7
10550090
Psychooncology. 2006 May;15(5):398-406
16100708
BMJ. 2004 May 15;328(7449):1159
15142919
BMJ. 2001 Nov 10;323(7321):1123-4
11701584
Br J Gen Pract. 2004 Jan;54(498):38-43
14965405
Can Oncol Nurs J. 2006 Fall;16(3):154-64
17523576
Respir Care. 2008 Oct;53(10):1310-5
18811992
Patient Educ Couns. 2008 Jun;71(3):365-77
18424046
Stud Health Technol Inform. 2006;122:38-43
17102214
Urology. 2008 Apr;71(4):567-72
18387384
Med Sci Monit. 2004 Nov;10(11):SR17-22
15507869
Psychooncology. 1998 May-Jun;7(3):207-17
9638782
Healthc Q. 2008;11(1):92-6
18326386
AMIA Annu Symp Proc. 2006;:759-63
17238443
Int J Med Inform. 2003 Jul;70(2-3):99-108
12909161
Arch Intern Med. 2005 Dec 12-26;165(22):2618-24
16344419
J Behav Med. 2009 Apr;32(2):187-96
18815877