Docs averse to sharing patient data, even for public health

By Molly Merrill
04:14 PM

When it comes to disclosing identifiable patient information, family doctors are reluctant to do so – even for public health purposes such as tracking influenza, according to a recent study.

A report published by 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, found that during the peak of the H1N1 pandemic in 2009 family doctors were hesitant to report detailed patient information for public health purposes, mostly in an effort to protect patient privacy.

El Emam said the study results are important today because it can help us to better understand 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,” said 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.”

The study included five focus groups with 37 family doctors from across Canada who identified three reasons they were not keen on sharing the 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, 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. Part of the model highlighted issues around collection, control and awareness, and it offered recommendations including:

  • De-identify data where possible (e.g. when identifiable information is not required for contact tracing)
  • Provide notice to patients
  • Establish that there is a clear link to patient benefits
  • Provide actionable, regular and clear feedback to physicians after the data is collected
  • Obtain support from the professional college(s)
  • Put in place data sharing agreements with physicians

"The study results provide a clear roadmap for public health authorities to get access to more community practice information," said. El Emam. "Patient data needs to be properly anonymized, and healthcare 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.”

Read the full report here.