Up for sale: Your secret health files
Companies buy medical histories from MDs, nurses
By Tyler Hamilton
TECHNOLOGY REPORTER
Dr. James Sears calls himself North Americas top medical investigator. So if
youve got any skeletons in your closet, watch out: Prying eyes may be watching.
Two years ago, Sears decided to launch a service that performs medical background checks for
companies wanting to verify the health history of job candidates.
The idea was to sniff out records - increasingly in electronic format - that reveal
undisclosed medical conditions that could result in numerous sick days and low productivity
somewhere down the road.
We do something nobody else in Canada does, says Sears, founder of The Second
Opinion, a Toronto-based business. In five years, we feel it will be as commonplace as
checking references on a résumé.
To date, his clients have included Canadian Tire and the Toronto Transit Commission.
Sears says he doesnt need access to the Internet to carry out his investigations.
Rather, his methods are much more simple: Make phone calls to doctors offices and
hospitals, and request data from receptionists, nurses and administrators who generally have
access to computer medical records.
Most times he has permission to carry out his checks through consent provisions on job
applications. If you don't, then you have to do a lot of hunting and digging. And we
have our ways of doing that, he says.
As a special report on privacy in todays @Biz section shows, it has never been
easier to collect personal health, financial and consumer information in this age of
electronic government and online commerce.
Its no secret that computers hold massive amounts of data on us, organized and analyzed
through sophisticated software. But as the tentacles of the Internet and other technologies
penetrate more and more areas of our lives, protecting our privacy from unwanted breaches
becomes more difficult.
Personal health data, perhaps the most sensitive of all information, continues to be
stockpiled at an alarming rate. Pharmacies, hospitals and doctors offices keep detailed
computer records of the drugs we buy and the medical attention we receive.
Increasingly, Internet and wireless technologies are linking this information and making it
more mobile. But the information gathering doesnt stop there. Consider the following:
Privacy advocates say the time has come to take a serious look at whos collecting this
data, where its going and how it will ultimately be used.
Medical information is flowing everywhere, says Stephanie Perrin, former director
of privacy policy for Industry Canadas Electronic Commerce Task Force.
Perrin became Canadas first chief privacy officer when she joined Montreal software
firm Zero-Knowledge Systems Inc. last year.
You would think intuitively that medical data is the first type of data to be protected
in Canada, she says. But you would be wrong.
Most of this information is collected with good intentions. And indeed, collecting medical
information on Canadians is generally thought to be crucial in formulating health policy and
conducting research into new drugs and technologies.
Often, says Perrin, the concern is not why this information is collected but who, along the
data trail, has access to it.
Jean Pruneau, Health Canadas senior policy adviser, says the federal department is in
the midst of conducting privacy impact assessments on its own systems. Over-all, hes
comfortable that organizations in the health sector are taking privacy seriously.
But some things continue to irk him.
What Im concerned about is the fact that when I go to my family doctor, the
secretary there is not bound by any code of professional conduct and has free access to all
my information, he says.
Last week, new private-sector privacy legislation came into force in Canada that gives
consumers more control over their personal information, and holds organizations more
accountable for how they collect and protect data.
But health information wont be covered by the law for another year, and it's still
unclear what organizations will be affected when it does.
There's this huge fight in the privacy community over whether Bill C-6 (the new privacy
legislation) was too weak with respect to medical data, says Perrin.
At the heart of the debate is whether organizations such as the Canadian Institute of Health
Information are using health information for commercial activity, a condition that would make
it subject to the new law.
Im not absolutely sure were captured by Bill C-6, says Michael Decter,
chairman of the institute. We will comply with it, but it was more intended for people
in the business of gathering health data to sell it.
Decter also says most of the data collected and shared is not personally identifiable. Still,
observers such as Valerie Steeves, a law professor at Carleton University who specializes in
privacy issues, are skeptical.
The doublespeak of the whole issue is that the information is valuable because its
linkable, she says. If you truly (make it anonymous), the value is dramatically
decreased.
Meanwhile, the Ontario government recently tabled health privacy legislation that has drawn
criticism from many privacy advocates. Critics charge that the draft bill gives government
departments and law enforcement agencies too many exemptions for gaining access to private
medical information on citizens.
As a result, opposition politicians are calling the proposed legislation the Big Brother
Bill.