Researchers want more access to personal health information

The Health Insurance Portability and Accountability Act has been instrumental in preserving the privacy of patients since 1996. Just this week, in fact, Blue Cross Blue Shield of Tennessee became the first health insurer to receive a fine for violating the security rule after 57 hard drives with protected health information on one million Blue Cross members were stolen from a leased facility in the state.

However, debates continue to rage about its enforcement. Some researchers believe that some medical records should be open for public viewing and use, especially if it means unlocking information that could potentially help future populations.

For instance, the Philadelphia Inquirer reports this week on a medical researcher's struggles to gain access to records from the 18th century to study eating disorders. The records are considered protected health information under HIPAA.

A more modern example involves the use of data from the de-identified electronic health records of prison inmates. According to the FierceEMR article, under the current HIPAA law, the de-identified data is not regulated.

Other HIPAA exceptions are available, as well, according to the Inquirer. Researchers looking to use protected information must submit a proposal that details why and how the data will be utilized. An administrative board then decides if the records can be opened.

The U.S. Department of Health & Human Services proposed a change to HIPAA two years ago that could allow access to patient records 50 years after their estates are closed, but currently, the amendment sits in wait, according to the Inquirer.

Similar issues are cropping up in Canada, as well. A commentary posted this week in the Vancouver (British Columbia) Sun calls for the use of EHR data in modern medical research.

"British Columbia is already known globally for leading-edge health research," former B.C. health minister Colin Hansen wrote. "The research community adds hundreds of millions of dollars to our economy. But we limit researchers' access to this data, because of concerns about protecting privacy that provincial regulations now make moot. It's time we proactively opened this B.C. advantage to health researchers and research funders locally, nationally and internationally."

For more information:
- here's the Philadelphia Inquirer article
- read the commentary in the Vancouver Sun
- read this FierceHealthPayer news

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