How De-Identified Patient Data Fuels COVID-19 Research

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There are many fronts in the fight against the novel coronavirus and the COVID-19 pandemic that has resulted from its spread. While the healthcare professionals caring for patients on the frontline are the most critical in the short-term, those behind the scenes doing the legwork on demystifying and containing the virus are just as critical.

And de-identified patient data will play a critical role in those efforts.

What is De-Identified Patient Data?

In the simplest terms, de-identified patient data is data that’s had any identifying patient information removed, including key identifiers like names, geographic data, birth date, telephone numbers and other contact information, Social Security numbers, and more that could point back to a particular individual.

This process can be particularly beneficial when masses of de-identified data are collected into databases that can be leveraged to gain deeper insight and understanding into an aspect of the healthcare system, a disease, etc.

The HIPAA Privacy Rule is well-known, but Section 164.514(a) perhaps less so. This section sets the standard for de-identification, labeling patient data that doesn’t identify an individual and doesn’t present any reasonable basis to believe the information could be used to identify an individual is not “individually identifiable health information.”

Further, de-identification can be achieved by either expert determination, when an expert applies statistical and scientific principles to determine the risk of identification is appropriately small, or safe harbor, when a lengthy list of identifiers outlined in the aforementioned section of the Privacy Rule are omitted.

How De-Identified Data Helps Fight COVID-19 and Other Disruptions

With a survey published on JAMA Network Open suggesting that patients are very willing to share de-identified data to elevate research efforts, this data is set up to play a vital role in mitigating the impact of this pandemic and prepping for future similar situations.

In particular, de-identified data can aid in the fight against COVID-19 by:

• Allowing for the use of large-scale databases providing more information to researchers looking into the spread of the virus, potential cures and vaccines, and more.
• Providing key insights into COVID-19-related demographics that could provide increased visibility into where the virus is spreading, how it’s affecting particular patients, why certain patients worsen or return to care, and more.
• Collecting more complete data about how certain treatments are affecting patient outcomes, leading to more successful outcomes in the short-term.
• Advancing the use of de-identified data in general, allowing its use to become more robust and attitudes to shift toward greater emphasis on this tool in the mitigation and reaction to potential future disruptions of this magnitude. In short, if it’s as helpful in the fight against COVID-19 as it has the potential to be, why wouldn’t the healthcare community continue to lean on it in future cases?

Leveraging De-Identified Patient Data

With proper utilization of robust EHRs and their capabilities, practices, hospitals and more across the country can play a critical role in boosting the overall healthcare system’s usage of de-identified patient data and databases.