title: Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study.
abstract: BACKGROUND
  Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.
  
  
  OBJECTIVE
  A qualitative study with purposeful sampling sought to examine patients' views and experiences with reading their health records, including their clinical notes, online.
  
  
  METHODS
  Five focus group sessions were conducted with patients and family members who enrolled in the My HealtheVet Pilot at the Portland Veterans Administration Medical Center, Oregon. A total of 30 patients enrolled in the My HealtheVet Pilot, and 6 family members who had accessed and viewed their electronic health records participated in the sessions.
  
  
  RESULTS
  Four themes characterized patient experiences with reading the full complement of their health information. Patients felt that seeing their records positively affected communication with providers and the health system, enhanced knowledge of their health and improved self-care, and allowed for greater participation in the quality of their care such as follow-up of abnormal test results or decision-making on when to seek care. While some patients felt that seeing previously undisclosed information, derogatory language, or inconsistencies in their notes caused challenges, they overwhelmingly felt that having more, rather than less, of their health record information provided benefits.
  
  
  CONCLUSIONS
  Patients and their delegates had predominantly positive experiences with health record transparency and the open sharing of notes and test results. Viewing their records appears to empower patients and enhance their contributions to care, calling into question common provider concerns about the effect of full record access on patient well-being. While shared records may or may not impact overall clinic workload, it is likely to change providers' work, necessitating new types of skills to communicate and partner with patients.
authors.affiliation: Portland VA Medical Center, Health Services Research & Development, Portland, OR, United States. susan.woods@va.gov
authors.forename: Susan S
authors.initials: SS
authors.lastname: Woods
authors.forename: Erin
authors.initials: E
authors.lastname: Schwartz
authors.forename: Anais
authors.initials: A
authors.lastname: Tuepker
authors.forename: Nancy A
authors.initials: NA
authors.lastname: Press
authors.forename: Kim M
authors.initials: KM
authors.lastname: Nazi
authors.forename: Carolyn L
authors.initials: CL
authors.lastname: Turvey
authors.forename: W Paul
authors.initials: WP
authors.lastname: Nichol
mesh_terms: D022126:Access to Information; D006801:Humans; D016347:Medical Records Systems, Computerized; D009922:Oregon; D010348:Patient Care Team; D017060:Patient Satisfaction; D010865:Pilot Projects; D036301:Qualitative Research; D014584:User-Computer Interface
references.citation: N Engl J Med. 1973 Sep 27;289(13):688-92
references.pmid: 4727972
references.citation: Br J Gen Pract. 1993 Feb;43(367):52-6
references.pmid: 8466775
references.citation: Arch Intern Med. 2004 Apr 12;164(7):793-800
references.pmid: 15078650
references.citation: Ann Intern Med. 2011 Dec 20;155(12):805-10
references.pmid: 22184687
references.citation: J Am Med Inform Assoc. 2004 Nov-Dec;11(6):505-13
references.pmid: 15299001
references.citation: Ann Intern Med. 2011 Dec 20;155(12):811-9
references.pmid: 22184688
references.citation: J Gen Intern Med. 2012 May;27(5):520-6
references.pmid: 22127797
references.citation: J Am Med Inform Assoc. 2004 Sep-Oct;11(5):410-7
references.pmid: 15187074
references.citation: Med Care Res Rev. 2009 Dec;66(6):703-24
references.pmid: 19549993
references.citation: Br Med J (Clin Res Ed). 1986 Mar 1;292(6520):596-8
references.pmid: 3081187
references.citation: Am J Manag Care. 2007 Jul;13(7):418-24
references.pmid: 17620037
references.citation: JAMA. 2008 Jun 25;299(24):2857-67
references.pmid: 18577730
references.citation: J Am Med Inform Assoc. 2010 Mar-Apr;17(2):203-11
references.pmid: 20190065
references.citation: J R Soc Med. 2009 Dec;102(12):539-44
references.pmid: 19966130
references.citation: J Am Med Inform Assoc. 2005 May-Jun;12(3):306-14
references.pmid: 15684128
references.citation: Ann Intern Med. 2012 Oct 2;157(7):461-70
references.pmid: 23027317
references.citation: Qual Health Res. 2005 Nov;15(9):1277-88
references.pmid: 16204405
references.citation: J Med Internet Res. 2005 May 24;7(2):e13
references.pmid: 15914460
references.citation: BMJ. 2008 Jun 7;336(7656):1290-5
references.pmid: 18511764
references.citation: Patient Couns Health Educ. 1980 1st Quart;2(1):1-5
references.pmid: 10294999
references.citation: Ann Intern Med. 2010 Jul 20;153(2):121-5
references.pmid: 20643992
references.citation: Diabetes Care. 2009 Feb;32(2):234-9
references.pmid: 19017773
references.citation: J Am Med Inform Assoc. 2010 Mar-Apr;17(2):192-5
references.pmid: 20190063
references.citation: J Gen Intern Med. 2009 Jun;24(6):727-32
references.pmid: 19412641
references.citation: Fam Pract. 2011 Apr;28(2):188-94
references.pmid: 21084568