The Trouble with Metadata and Health Privacy
technology over the past decade have raised serious concerns for patient privacy,
an issue that sparked an intense panel discussion at the Second International
Summit on the Future of Health Privacy, held last week in Washington, DC. Panelists
debated current legislation’s ability to properly protect patients in the age
of smart phones, tablets and electronic records. For James Pyles, a health law
attorney who has worked on privacy measures for HIPAA and the HITECH Act,
legislation is lagging far behind technology, leaving patients unprotected from
potential electronic violations of privacy.
"We now have electronic
disclosures of patient privacy that are entirely different from disclosures of
paper records," Pyles said. "You can get a paper record back; you
cannot get an electronic record back. You can disclose millions of electronic
records simultaneously; you cannot do that with paper records."
"The damage that
can be done to someone is perpetual," Pyles added. "And the damages
that can be awarded are incalculable."
Joy Pritts, chief
privacy officer for the Office of the National Coordinator for Health IT (ONC),
agrees with Pyles that technology is advancing much quicker than the law, although
she did argue that HIPAA still has its strengths. Under HIPAA, enforcement of
federal privacy regulations is in the hands of the states, who are free to extend
enforcement beyond the floor set by the federal regulation.
"In some states,
there are very strict standards on how [health information] can be
shared," Pritts said. "In other states, they didn't see a need to do
that because they thought patients were comfortable getting care and sharing
that information for certain purposes without having to expressly write it down
on a piece of paper."
Adding fuel to the fire,
Frank Pasquale, a healthcare regulation and enforcement professor at Seton Hall
University, brought up the related debate over metadata and its potential to
give patients more control over their personal information. "We've got to
create new modes, enable modes of granular control over the data in order to
make people feel safe,” Pasquale said. “Otherwise, we're never going to have
the type of benefits we can get from big data analysis, from observational
Metadata, according to the ONC, is data that
provides more detail or information about a piece of data, which has the
potential to drastically improve the way health organizations communicate
electronically. However, without any accepted standards for metadata tags, the National
Committee on Vital and Health Statistics (NCVHS), the statutory public advisory
body to the U.S. Department of Health & Human Services, recommended that
the ONC refrain from including metadata standards in Stage 2 of the Meaningful
Use incentive program.
Referring to the NCVHS’s recommendation,
Pritts told the panel last week that metadata is currently on hold for
electronic health records, at least until metadata standards are better
assessed and understood. With such a powerful tool at hand, precautions must be
taken to ensure there are no unintended consequences that could infringe on