Healthcare Privacy Issues Hinder Data Sharing, Report Finds

Certain barriers to public health data sharing, such as healthcare privacy issues, could hinder decision-making efforts on numerous levels, according to an international team of researchers led by the University of Pittsburgh Graduate School of Public Health.

Specifically, 20 potential barriers were identified and classified in six categories: technical, motivational, economic, political, legal and ethical. Researchers concluded that the simultaneous effect of multiple interacting barriers has greatly complicated advances in public health data sharing. Moreover, a systematic framework of barriers to data sharing in public health is necessary to further the use of valuable information across the globe.

The protection of healthcare privacy was one area that researchers found could hinder the growth of data sharing. For example, public health agencies can collect private data from the population governed by HIPAA in the US, or through similar legislation in other countries.

“A clear distinction between data containing personal identifiers and fully anonymous data may not always be possible, leading to restrictive policies on all types of data due to privacy concerns,” the report said. “Aggregated data without personal identifiers may not be sufficiently detailed for certain applications. Existing tools and standards for the de-identification of personal identifiers such as statistical data masking may not be known or available in many contexts.”

Additionally, the ownership and copyright of that data could prevent organizations from being able to share information. For example, one issue is that it is rarely well-documented or understood who owns public health data. This can result in “inconsistent ad-hoc guidelines” that result in a default of restricting access to most data, researchers said.

In terms of healthcare technical barriers, the findings showed that a restrictive data format or even organizations being unable to use certain technical solutions could hinder data sharing.

“Despite major advances in computational resources in public health, a large volume of public health data such as disease surveillance data and administrative data continue to be collected and preserved in hardcopy paper format or in electronic format that may be antiquated or incompatible with modern software systems,” researchers explained.

There can also be the issue of interoperability, as the findings revealed that some technical software solutions – used to collect, harmonize and share complex data – were developed in the private or research sector, but might not be widely available to public health agencies.

Being able to properly preserve healthcare data, while also understanding how to find it, can be detrimental to the expansion of public health knowledge.

“Even if data have been preserved, data retrieval systems may be lacking,” researchers stated. “This is amplified by relocation of offices, staff turnover, physical damage to paper or electronic files, computer viruses, computer theft, etc.”

Moreover, the preservation or archiving of data is typically not prioritized, especially in situations of limited capacity and resources.

These challenges, and others, must be addressed comprehensively instead of one by one, said senior author Donald S. Burke, M.D., Pitt Public Health dean and UPMC-Jonas Salk Chair of Global Health.

“We must work together as a global community to develop solutions and reap the benefits of data-sharing, which include saving lives through more efficient and effective public health programs,” he said in a statement.