New report explains why physicians are reluctant to share patient data

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Family doctors are reluctant to disclose identifiable patient information, even in the context of an influenza pandemic, mostly in an effort to protect patient privacy. A recently published study by Dr. Khaled El Emam the Canada Research Chair in Electronic Health Information at the University of Ottawa and the Children’s Hospital of Eastern Ontario Research Institute recently found that during the peak of the H1N1 pandemic in 2009, there was still reluctance to report detailed patient information for public health purposes. These results are important today, so we can learn from that experience and prepare for the inevitable next pandemic.

“There is a perceived tradeoff between the public good and individual privacy. If we sway too much on the public good side, then all people’s health data would be made available without conditions,” explained Dr. El Emam. “If we sway too much on the individual privacy side then no health data would be shared without consent, but then this would potentially increase public health risks. Physicians are important gatekeepers of patient information, so we need to better understand the conditions under which they are willing to provide patient data so that everyone wins; we do not need to make these tradeoffs.”

Five focus groups with 37 family doctors from across Canada provided insights into the reasons they were reluctant to share patient data. First, the physicians were concerned about the privacy of their patients, and did not know if the data uses would be limited to dealing with the pandemic. 

Second, they also did not perceive that they would get direct benefits back to them and their patients from giving data to public health. Finally, there were concerns about how the data could be used to evaluate their performance. Using these results, Dr. El Emam and his co-authors constructed a model to offer guidance on how public health can work with family practices to encourage data sharing for disease surveillance purposes.

“The study results provide a clear roadmap for public health authorities to get access to more community practice information,” noted Dr. El Emam. “Patient data needs to be properly anonymized, and health care practitioners must be provided with timely and actionable feedback. It should not be taken for granted that the medical community is willing to give data unconditionally.”

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About Dr. Khaled El Emam: Dr. El Emam, Associate Professor, Faculty of Medicine and the School of Information Technology and Engineering, University of Ottawa, is a senior scientist and Principal Investigator at the Electronic Health Information Laboratory at the CHEO Research Institute.

About the CHEO Research Institute: Established in 1984, the CHEO Research Institute coordinates the research activities of the Children’s Hospital of Eastern Ontario (CHEO) and is one of the institutes associated with the University of Ottawa Teaching Hospitals. The Research Institute brings together health professionals from within CHEO to share their efforts in solving paediatric health problems. It also promotes collaborative research outside the hospital with partners from the immediate community, industry and the international scientific world.

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Contact: Adrienne Vienneau

Children’s Hospital of Eastern Ontario Research Institute

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