The Role of Privacy in Practice: Electronic Health Records in Pediatrician Interactions with Patients (New York)

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Summary:

Electronic health records (EHRs) are known to improve quality of health care by collecting, aggregating, and disseminating patient health information. However, confidentiality and privacy concerns present significant barriers to effective EHR use, especially among adolescents who may already have health information privacy concerns, such as keeping sensitive information from family or peers.

This study examined how the use of EHRs affected doctor-patient interaction, privacy, delivery of care, and disclosure among pediatric providers and their adolescent patients. Researchers conducted patient and provider interviews to evaluate opinions of how EHRs supported patient-centered care and facilitated information sharing in health care. Outcomes were intended to inform the future development of IT applications and implementation strategies in real world settings in order to alleviate privacy concerns.

The specific aims of the project were as follows:

  • Explore how the use of EHRs affects privacy perceptions among adolescent populations. 
  • Explore the extent to which perceptions of privacy surrounding EHRs affect the way adolescents communicate health information to pediatricians. 
  • Explore how perceptions of privacy and the use of EHRs affect the way pediatricians communicate with patients. 
  • Explore how perceptions of privacy and the use of EHRs affect the way pediatricians use IT to record and disseminate patient information. 

Researchers conducted qualitative, semi-structured, in-depth interviews with ambulatory pediatric patients, pediatricians, nurses, and administrators at two study sites. Results found that adolescents expressed praise and concern for the role of EHRs as a way to store and communicate health information with providers. Though they came to health care encounters with a variety of experiences that shaped disclosures, perceptions of privacy, and the role of parental involvement in their health care, most adolescents did not know what information was accessible to themselves or their parents via EHRs and patient portals. This lack of understanding about access, privacy, what kind of information was recorded, and parental rights to access, colored interpretations of privacy and confidentiality. Common themes from interviews with health care providers included discussions about how EHRs affected patient confidentiality and information control, and the potential effects of adolescent health information being permanently stored in an EHR.

Findings from this study suggest that EHR limitations resonated among pediatric providers, as they had to alter work flow, routines, and privacy practices and re-conceptualize how confidentiality, privacy, and disclosure were managed via the EHR. By observing the experience of adolescents and their health care providers, the hope is that this exploratory study will inform larger, focused, and targeted studies of EHRs in the years to come.

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The Role of Privacy in Practice: Electronic Health Records in Pediatrician Interactions with Patients - Final Report

Citation:
Stablein, T. The Role of Privacy in Practice: Electronic Health Records in Pediatrician Interactions with Patients - Final Report. (Prepared by Union College under Grant No. R03 HS021537). Rockville, MD: Agency for Healthcare Research and Quality, 2016. (PDF, 438.19 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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