Abstract

BackgroundPrivacy concerns by providers have been a barrier to disclosing patient information for public health purposes. This is the case even for mandated notifiable disease reporting. In the context of a pandemic it has been argued that the public good should supersede an individual's right to privacy. The precise nature of these provider privacy concerns, and whether they are diluted in the context of a pandemic are not known. Our objective was to understand the privacy barriers which could potentially influence family physicians' reporting of patient-level surveillance data to public health agencies during the Fall 2009 pandemic H1N1 influenza outbreak.MethodsThirty seven family doctors participated in a series of five focus groups between October 29-31 2009. They also completed a survey about the data they were willing to disclose to public health units. Descriptive statistics were used to summarize the amount of patient detail the participants were willing to disclose, factors that would facilitate data disclosure, and the consensus on those factors. The analysis of the qualitative data was based on grounded theory.ResultsThe family doctors were reluctant to disclose patient data to public health units. This was due to concerns about the extent to which public health agencies are dependable to protect health information (trusting beliefs), and the possibility of loss due to disclosing health information (risk beliefs). We identified six specific actions that public health units can take which would affect these beliefs, and potentially increase the willingness to disclose patient information for public health purposes.ConclusionsThe uncertainty surrounding a pandemic of a new strain of influenza has not changed the privacy concerns of physicians about disclosing patient data. It is important to address these concerns to ensure reliable reporting during future outbreaks.

Highlights

  • This amounts to an 86% participation rate, which is slightly higher than the participation rate we had assumed in the design (40/60 at 66%)

  • Privacy concerns by providers have been a barrier to disclosing patient information for public health purposes

  • We found that Canadian family doctors do have concerns about patient privacy and about the disclosure of information that may be reflective of their own performance

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Summary

Introduction

Privacy concerns by providers have been a barrier to disclosing patient information for public health purposes This is the case even for mandated notifiable disease reporting. The US Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule permits the disclosure of PHI to a public health authority without patient authorization [32,34,35,36,37,38,39,40]. It is not known whether such pre-existing privacy concerns would be diluted in the context of an actual pandemic influenza outbreak. Continued patient privacy barriers to reporting during a pandemic reflect a fundamental problem with data disclosure practices, which need to be addressed

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