More MS news articles for January 2000

Can you keep a medical secret?

Date :01/06/2000
Author :Daniel J. Murphy
Copyright :Investor's Business Daily
Title :Can You Keep a Medical Secret?

Who would want to go through what happened to Deborah, a secretary for a major company in the Southeast?

Here's her story: Deborah (not her real name) casually mentioned to colleagues in the spring of 1997 that her exposure to hepatitis would keep her from taking part in a company blood drive. Her father had had the disease.

When the company found out, it demanded she get tested for hepatitis. She did so.

But there was a hitch: Deborah was asked to sign a release that would open up her medical records to her employer.

She refused. Over the next four weeks, she was twice suspended without pay - the second time for insubordination. Finally, the tests came back. Deborah was clean.

Did that end her ordeal? Hardly. When she returned to the job, she was furnished with latex gloves to use whenever she was near food. Angry, humiliated and fed up, she quit.

Deborah is just one of thousands of such stories each year - and they're becoming increasingly common as the information age reaches deeper into our lives. Medical problems aren't just a matter between you and your doctor anymore.

Thanks to the rise of electronic technology and managed care, more and more people have access to your personal information - whether you know it or not. Insurance carriers, government health programs and researchers routinely have the keys to your health closet.

But there's an upside, too. The increased flow of information has helped improve health outcomes in a number of areas.

Still, the bottom line of guarding one's personal information takes precedence over wider concerns.

Plenty of incidents have been made public: From news that the late tennis star Arthur Ashe had contracted AIDS from a blood transfusion to a member of Congress reading of her suicide attempt in a local newspaper, privacy concerns have grown, according to polls taken during the last decade.

A Princeton Survey Research Associates poll of 1,000 adults last January revealed that most Americans trust only health-care professionals and their institutions with their information.

Barely a third think government programs and private health plans can keep their medical secrets hidden (see chart).

Now Washington is again taking a look at medical privacy, something that's been kicked around Capitol Hill since the mid-1990s.

Although Congress missed its self-imposed August 1999 deadline for taking action, President Clinton in late October announced the federal government's first attempt to give patients more control over their medical records.

The Department of Health and Human Services will take comments from the public until Feb. 17. The rules would take effect in 2002.

Clinton's proposal would grant patients more rights to see, correct and request who has seen their records while permitting health-care providers to share information, without consent, to fulfill treatment, payment, the public health and necessary business uses.

"The administration has made a serious attempt to address some of the privacy issues, and misses the boat on the most crucial of issues," said Peter Kane, executive director of the National Coalition for Patient Rights, an advocacy group based in Andover, Mass.

Kane explains that the plan sets aside the question of privacy as the fundamental right governing medical records.

"You should not have to just release your records in order to get the benefit that you've earned as a worker," Kane said. "Rather, you should have much more control over what is released, be explicitly told and made to understand what is being released when you sign for that release." Health insurers agree about keeping records confidential. But information exchange is key to their business.

"Insurers, health plans, doctors and hospitals must be able to send and receive medical information to assure that consumers can get high quality care," Health Insurance Association of America chief Chip Kahn said late last year when Clinton's new health-privacy plan was unveiled.

So a lot will ride on the perception of how porous personal medical records will become.

The administration's proposed rules would add billions in expenses, according to health insurers.

Researchers and marketers would have to gain personal consent to do their work. Law enforcement also would be forced to get warrants to gain access to medical information in cases it now doesn't have to.

A careless process for deciding who gets access to personal information will affect individuals' approach to health care as well as medical research. Respect for medical privacy is as old as Hippocrates, who counseled doctors to keep their patients' secrets "sacred."

Personal fears about having medical information leak already has stirred people into taking a variety of evasive actions.

Many fear a job or a promotion at work could be denied or that health claims
would go uncovered if their records were exposed.

"In (obstrectics) I would have patients come in, and in a personal way they would discuss their smoking and drinking and caffeine habits. But they would never tell you about cocaine," said Rep. Ron Paul, R-Texas, himself a medical doctor.

"It was done for two reasons," Paul continued. "One was they could get arrested. Two, they might lose their children. So, because of certain laws, they become very frightened."

Paul frames the issue along private vs. government lines.

"We're struggling here with the government becoming pervasive in everything that we do, and now particularly in medical care. The fact that they pay for medical care, they then take it for granted that that they have the right to know everything about it," he said.

The Clinton administration's push for a national medical ID adds to the Big Brother perception. Kane terms the idea "horrendous."

But on a more practical level, patients not confident that their medical ills will be kept hidden could act against their interests in at least two ways.

The first would adversely affect their financial health. Rather than seek treatment otherwise covered by an employer's plan, they find a doctor outside that network and pay out-of-pocket for services rendered.

A second response could endanger patients' very health. Most men suffering from impotence, for instance, obviously would hesitate broadcasting their condition.

The fear that it might become known to an employer or a snoop might keep them from seeking medical services at all.

At the same time, scientific evidence is emerging that that single embarrassing health problem could signal more serious ones, like heart disease.

Wider records-sharing partly explains why much more is known today about that which was barely mentioned a few years ago.

A GAO report published a year ago said local Institutional Review Boards routinely waive applying informed consent requirements for medical records based research.

Headline-grabbing examples make up only a few of many improvements gained through relying on personal medical histories.

To a House panel in July, Paul Clayton of Intermountain Health Care in Salt Lake City cited reduced mortality rates for treating community-acquired pneumonia and those using mechanical respirators.

Researchers also say that having personal medical records on hand helps maintain the integrity of ongoing studies. The proposed rules, though, would require all researchers to get consent before using personal medical records in the course of their work.