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Prescription Data Used to Assess ConsumersRecords Help Life and Health Insurers but Prompt Privacy Worries Story by WashingtonPost.com Health and
life insurance companies have access to a powerful new tool for evaluating
whether to cover individual consumers: a health "credit report" drawn
from databases containing prescription drug records on more than 200 million
Americans. Collecting
and analyzing personal health information in commercial databases is a fledgling
industry, but one poised to take off as the nation enters the age of electronic
medical records. While lawmakers debate how best to oversee the shift to
computerized records, some insurers have already begun testing systems that tap
into not only prescription drug information, but also data about patients held
by clinical and pathological laboratories. Traditionally,
insurance companies have judged an applicant's risk by gathering medical records
from physicians' offices. But the new tools offer the advantage of being
"electronic, fast and cheap," said Mark Franzen, managing director of
Milliman IntelliScript, which provides consumers' personal drug profiles to
insurers. The trend
holds promise for improved health care and cost savings, but privacy and
consumer advocates fear it is taking place largely outside the scrutiny of
federal health regulators and lawmakers. Ingenix, a
Minnesota-based health information services company that had $1.3 billion in
sales last year -- and Wisconsin-based rival Milliman -- say the drug profiles
are an accurate, less expensive alternative to seeking physician records, which
can take months and hundreds of dollars to obtain. They note that consumers
authorize the data release and that the services can save insurance companies
millions of dollars and benefit consumers anxious for a decision. "Some
insurers can make a decision in the same day, or right on the spot,"
Franzen said. "That's the real 'value-add.' " But the
practice also illustrates how electronic data gathered for one purpose can be
used and marketed for another -- often without consumers' knowledge, privacy
advocates say. And they argue that although consumers sign consent forms, they
effectively have to authorize the data release if they want insurance. 'Vast'
amounts of information Ingenix and
Milliman create the profiles by plumbing rich databases of prescription drug
histories kept by pharmacy benefit managers (PBMs), which help insurers process
drug claims. Ingenix, for instance, has servers in the PBM data centers,
updating the drug files as frequently as once a day, said John Stenson, senior
vice president of consulting for Ingenix, which is a division of UnitedHealth
Group. The corporation also owns UnitedHealthcare, the nation's second-largest
insurer. When an
insurer makes an online query about an applicant, Ingenix or Milliman's servers
scour the data and within minutes or less return reports to a central server at
the company. The server aggregates the information going back as far as five
years, including the drugs and dosages prescribed, dates filled and refilled,
the therapeutic class and the name and address of the prescribing doctor. 'Pharmacy
risk score' Ingenix's
MedPoint tool provides insurers a "pharmacy risk score," or a number
that represents an "expected risk" for a group of people, such as 30-
to 35-year-old women who have taken prescription drugs, Stenson said. Higher
scores imply higher medical costs. Milliman's
IntelliScript codes drugs red, yellow or green, according to the insurer's
instructions, with red signaling the greatest risk, Franzen said. Red codes
could include the so-called AIDS cocktail drugs and cancer medications, he said.
The companies
receive data only on individuals who are in clients in PBMs' databases,
generally excluding, say, people who pay for drugs in cash. The profiles cost
insurers about $15 a search. IntelliScript gets about 1 million queries from
insurers a year, largely individual health insurers. The system
can save money for insurers, said Richard Dick, an entrepreneur who built the
database system that Ingenix acquired in 2002. For instance,
if MedPoint produces a report that an individual has been on the highest dose of
the cholesterol-reducing drug Zocor for 18 monts, the insurer "would be
able to know that you have a very high, near-intractable cholesterol
problem," Dick said, and could avoid a costly blood test. From a
business standpoint, it makes no sense for an insurer to sell a plan with a $200
monthly premium if the company knows that the consumer is taking medications
that cost $400 every six months, industry experts said. That is why having
access to an "objective" source of third-party information is
valuable, said Tia Goss Sawhney, a Chicago area health insurance actuary who has
used both companies' tools. "Though most people tell the truth most of the
time, there are people out there who don't, who leave out something that's
incredibly relevant, who may even be able to defraud a company," she said.
"That's important because ultimately the people who tell the truth have to
pay for those who don't." Franzen,
whose firm expects revenue of $575 million this year, said his clients tell him
that about 10 percent of applicants do not disclose pertinent medical conditions
in their applications that are later revealed by prescription drug history. Some health
experts worry that insurance companies can make faulty assumptions by looking at
prescription drug records, because many drugs have multiple uses. "I had a
patient on Amitriptyline for migraines and they were denied life insurance
because it's also an antidepressant," said physician Kate Atkinson of
Amherst, Mass. "I had to explain it wasn't being used for depression."
Another patient was on Prozac -- not for depression, but for menopausal hot
flashes. "I wrote an appeal letter, and they still wouldn't give it to
her," Atkinson said. Services such
as MedPoint are just "one of many tools" underwriters use to make
coverage decisions, said Tyler Mason, a spokesman for UnitedHealthcare, which
uses MedPoint. A high-risk score on a profile will often lead to requests for
more information from the applicant, he said. Ingenix and
Milliman officials stress that they provide data only with the patient's
consent, as required by the Health Insurance Portability and Accountability Act
(HIPAA), a 1996 law that governs personal health records information. But HIPAA
does not give the Department of Health and Human Services the ability to
directly investigate or hold accountable entities, such as pharmacy benefit
managers or companies such as Ingenix and Milliman, who are not covered by HIPAA. A health
privacy proposal pending in Congress would expand federal officials' ability to
regulate such "downstream" organizations, audit their activities and
impose civil fines. The bill also includes a prohibition on the sale of
electronic medical records. Tim Sparapani,
senior legislative counsel at the American Civil Liberties Union, said that the
products that Ingenix and Milliman are marketing represent the "commodification"
of electronic medical records by third parties. "We've got to stop these
practices before the marketplace is fully developed and patients lose all
control over their medical information," he said. Field
growing rapidly "A lot
of insurance companies are starting to use this type of data," said
Determan, who co-founded IntelRx, a company that mined prescription databases
and was sold to Milliman in 2005. "They said, 'All right. Prescription data
is working, let's go and look at other types of data, too.' It's because of the
success of one, that we're going after others." In February,
the Federal Trade Commission issued an order saying that MedPoint and
IntelliScript are consumer reports under the Fair Credit Reporting Act, so the
companies must notify insurers that consumers denied insurance on the basis of
these reports have the right to request a copy of the report and that errors be
corrected. The FTC's order followed a settlement of allegations that the
companies violated the credit-reporting law by failing to provide such notice to
insurers. 'Absolutely
outrageous' As more
health records become electronic, he said, more parties will compete to sell
more comprehensive patient data to insurers, driving down data prices. "It
will all likely be lawful," Gellman said, "but consumers will likely
continue to have no real meaningful choices if they want insurance." Dick, who
conceived the idea of linking the pharmacy databases for underwriting purposes a
decade ago, said the pharmacy benefit managers understood the system's privacy
implications. He said their attitude seemed one of, " 'Ooh, this is a 60
Minutes' story in the making.' Generally, they wanted to make it a super-secret
database, restricted to underwriting." But now, he
said, "there's a huge case for it being opened up for all legitimate
access," whether for a patient in an emergency room or for federal
government purposes. The key, he said, is full transparency. He said he
has created a privacy tool that requires users to consent before specific data,
such as prescription histories, can be released. To work, he said, the tool must
be independent of all who hold the data.
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