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The providers’ dilemma: audience, privacy and the documentation of stigmatizing diseases in the electronic medical record
Zickmund SL, Tuepker A, Morrison PK, Hahm BM, Nikolajski C, Post LA, Butler J, Hickam DH. The providers’ dilemma: audience, privacy and the documentation of stigmatizing diseases in the electronic medical record. Paper presented at: VA HSR&D / QUERI National Meeting; 2012 Jul 17; National Harbor, MD.
Having accurate and complete information in the electronic medical record (EMR) is important for medical providers and researchers alike. Yet little is known about how providers who manage patients with stigmatizing conditions like post traumatic stress disorder (PTSD) negotiate those multiple audiences with EMR access.
As part of the Veterans Administration (VA) Consortium for Healthcare Informatics Research (CHIR), we conducted focus groups with providers experienced in caring for patients with PTSD at five geographically diverse VA sites. All focus groups were transcribed verbatim. The codebook construction and analysis was guided by Crabtree and Miller's qualitative "editing" approach. Two analysts double-coded 89% of the transcripts using Atlas.ti qualitative software; differences were adjudicated through discussion. The final inter-coder reliability kappa statistic was 0.86.
We invited 191 VA providers to participate. Sixty-three (33%) responded, 48 (76%) agreed to participate with 44 attending the focus groups. Providers agreed that a key barrier to documenting PTSD was their concern regarding the access of multiple audiences. First, providers expressed anxiety over patients having access to their notes, especially those who were mentally unstable: "I sometimes am very cautious about having tailored my notes.when I suspect the patient is paranoid." Second, participants sought to keep details away from non-mental health providers: "There may be something that I want to write about but I don't because I'm concerned that primary care is going to bring it up and it's not really appropriate." Finally, providers expressed concern about third parties (lawyers, insurers, governmental agencies) adversely impacting their patients: "There was also a case where someone had actually documented.an atrocity that was committed. And it was later subpoenaed in a divorce case."
The withholding of information by providers to protect the confidentiality of PTSD patients was frequently described. The consequences of undocumented information for stigmatizing conditions like PTSD is currently unknown and is in need of further research.
This study raises questions about the quality and the usefulness of EMR documents for patients with stigmatizing conditions. Limited documentation can also prevent health services and bioinformatics researchers from accurately measuring the quality and processes of care.