Inside 1to1:Privacy

Drive to Digital Records Begs Due Diligence

October 1, 2009

By Larry Dobrow

While making the case for his overhaul of the public healthcare system, President Obama has doted on one of its provisions: that all personal health records should be digitalized and melded into a single standard format within five years. Doing so, he believes, will reduce administrative headaches--one provider won't have to get on the phone with another to access a patient's hard-copy record--and thus bolster the overall quality of care. The medical community largely supports the digitalization push.

Thus in theory, computerizing health records makes all the sense in the world. In practice, however, the project will prove considerably more challenging.

Individuals who have participated in such projects caution that the digitalization of any large mass of sensitive data is an endeavor fraught with risk, especially from a privacy and security standpoint. They caution that creating a national privacy framework from the patchwork of laws and regulations currently governing the handling of this information could prove a political and practical migraine. And they say that the healthcare industry's rep for being slow to embrace new information technology isn't going to help matters much.

"Healthcare has traditionally been a laggard in this space," notes Steve Smerz, chief information officer and chief security officer of VisionShare, a firm which offers connectivity for healthcare entities. "In finance or even manufacturing, they've applied the technology and automated their businesses much more substantially than healthcare companies have. It's going to be hard to push things through."

Adds Lisa Gallagher, senior director of privacy and security for the Healthcare Information and Management Systems Society: "There's a tremendous amount of work that still needs to be done concerning the records. We're operating in an environment where there are 50 different [state] privacy policies. Electronic health records pose many difficult issues on the policy and implementation levels."
 
It makes sense, then, that government officials entrusted with this project would look towards private entities, whether healthcare-focused or not, whose bottom lines depend upon the vigorous protection of sensitive personal data. Before they do, however, they'd be wise to heed the lessons still being learned by their counterparts in other nations.
 
Skepticism about Canada's transition to computerized health records perhaps has been exacerbated by reports of health privacy breaches. Headlines such as "300K patient files on stolen laptops" and "Albertans' health records exposed to computer hacker" don't exactly inspire confidence. Australian authorities entrusted with the online records push have been slowed by many of the same issues, with the country's privacy commissioner scolding her peers for pursuing privacy quick-fixes. And the seemingly regular headlines about breaches of electronic records within Britain's National Health Service should give cause to pondering by U.S. authorities.
 
The problem, say some, is one of both lax supervision--many of the companies and institutions handling the digital health records lacked a chief privacy officer or comparable individual responsible for overseeing the process--and poor coordination among the myriad players in the healthcare system.

"You can't just say 'we're going to do this.' Don't understate the role of public trust. There has to be plenty of explanation," notes Andro Hsu, science and policy liaison for 23andMe, which seeks to help individuals better understand their genetic information. 23andMe has proposed legislation in California to clarify existing privacy regulations and upgrade privacy protections.

Smerz puts it more succinctly: "Transparency is the key. If people feel that they know what the government is doing and not doing with their data, they're more comfortable with it."

The government must also heed the approach of private firms when it comes to data minimization (malfeasants can't steal information that isn't collected) and a major-league education process for any/all government employees who will handle the information on even an occasional basis (lesson one: storage on laptops = bad). It wouldn't hurt to do more than merely encrypt the data; extensive data masking, for instance, would render decoding the information enormously challenging.

Possible roadblocks include the readiness of healthcare system players. "With some of my customers, I find that they don't even have a firewall up in their data environment," says Smerz. And, of course, there remains a vocal minority who believe that no matter what the government does, it will never truly be able to guarantee the sanctity of the information. "You hear more about the failures than you do the successes," Smerz adds.

As for when the digitalization effort will proceed, Smerz and Gallagher believe the timetable offered up by the Obama administration might be a tad optimistic. Gallagher notes that there are "so, so many players" involved, while Smerz anticipates a series of "small wins" before the big ones occur. "Four years is not obtainable," Smerz adds flatly.

Both, however, cite momentum towards a solution and a willingness from most of the players involved to hammer out a privacy-sensitive solution. "We're in a care-giving environment," Gallagher says. "It's a time and place where peoples' intentions are good. If that's the general culture, this whole process can be a really positive thing."