Act Now to Prevent Genetic Discrimination

Cheers to IBM for its recent pledge to not use genetic information in its hiring practices or in deciding eligibility for health insurance coverage for its 300,000 employees. Yet the fact that IBM felt the need to take such action highlights the gap in federal legislation to adequately protect job candidates and employees from discrimination based on their personal genetic information. And will it be a bellwether for action on a national level?

At least 20 bills have been introduced in Congress to prohibit genetic discrimination in the past 10 years. Only one has passed, providing limited protection against genetic discrimination for the group health insurance market. National legislation to prohibit genetic discrimination by employers and health insurers is way overdue.

A prime example of the abuse of genetic information is a much-publicized $2.2 million settlement between Burlington Northern Santa Fe Railway Co. and the U.S. Equal Employment Opportunity Commission. The railway tested or sought testing for 36 unsuspecting employees in an attempt to establish that injury claims were due to genetic disease and not to work-related activities. The science here was shaky, but the surreptitious misuse was clear-cut.

The recent case involving former Chicago Bulls basketball player Eddy Curry and the team’s request for DNA testing to diagnose a heart arrhythmia also highlights the interest in genetic information in making personnel decisions.

Testimony before a federal advisory committee on genetics, health and society last year revealed that citizens were avoiding or hiding test results because they might lose their health insurance. Do we want women with a family history of breast cancer deciding not to get tested out of fear of discrimination?

As more genetic tests are developed to help prevent disease or enable early detection, protections against the potential misuse of genetic information become ever more important. Employers may decide not to hire someone based on his or her genetic predisposition to diseases such as cancer or heart disease. Or an insurer may raise premiums or decline coverage for individuals with a high risk of disease or disability based on genetic differences. The enactment of national legislation to protect all individuals from genetic discrimination will not just benefit a select few who are affected with a genetic disease. All of us have genetic miscues in our genomes that may one day lead to disease. Given all of the bills introduced over the last 10 years, what is the hang-up in passing this legislation? Most politicians support the legislation, as evidenced by the Senate vote on the most recent bill — 98 to 0. And the president has indicated his willingness to sign such legislation. Ironically, groups that represent employers have voiced concerns that this bill addresses a problem that doesn’t exist and creates a new cause of action against employers. Therefore, the announcement by IBM comes both as a surprise and a welcome vote of confidence that businesses can survive without peering into the genomes of potential and current employees.

In the absence of national protections, most states have passed legislation to prohibit or limit the use of genetic information for risk selection and risk classification for health insurance or employment purposes. However, the scope of protections varies by state. The only other employer known to offer protection from genetic discrimination is the federal government; in 2000, an executive order was signed by President Clinton providing protection for 2.7 million federal employees. If the move by IBM instigates more employers to develop their own policies on the use of genetic information, this will result in a messy patchwork of company policies on top of inconsistent state laws.

Regardless of how widespread genetic discrimination practices are, the fear of discrimination could cripple important genetic-related technologies before they are introduced. Fear drives policy, as evidenced by the anxiety surrounding genetically modified organisms in Europe. Without national protections, individuals may decline to participate in genetic research studies or may compromise their health by refusing testing of their genomes, thereby halting the field and promise of genetics. This is why IBM’s action provides a model for Congress. Let’s not squander the promises of genetics by failing to protect our citizens from discrimination.

Susanne B. Haga is senior policy analyst for the Institute for Genome Sciences and Policy at Duke University. Huntington F. Willard is director of the institute.

TSA Looks to VA and DoD for “Mental Defectives”

Military personnel and veterans with mental health issues could end up on the TSA’s “Watch List” and be denied access to commercial flights Who has access to the information is a primary concern.

{Whose medical and mental health records will be next for surveillance? As Congress moves rapidly to build a national Health Information Network, with open access to all 290 million American’s sensitive medical records by over 600,000 private corporations and government agencies, we can expect surveillance and all sorts of privacy violations of by fearful and grossly misguided people who happen to have legal access to the nation’s medical records. ~ Dr. Deborah Peel, Patient Privacy Rights}

Complaint: Drug studies done on mentally ill without consent

A patients’ rights group has filed a complaint with the U.S. Department of Health and Human Services saying the state of Texas gave drug companies access to files of mentally ill patients and permission to conduct studies without patient consent.
A representative of the Texas Department of State Health Services said the claim is not true, and that the state adheres to all legal and ethical considerations when allowing access to patients in its care.
Deborah Peel, president of the Austin-based Patient Privacy Rights Foundation, filed the complaint on behalf of patients in the state’s mental hospitals anytime since 2000 who were subjects of studies by major drug companies, according to the complaint.
“Last week, based on documents I was provided, I became aware of long-standing systemic practices by drug company researchers working hand in glove with state officials and physicians working for the state to coerce mentally ill hospitalized patients in several state mental hospitals to participate in drug research trials,” Peel wrote in the complaint.
Peel said she was made aware of the situation by a reporter from K-EYE news in Austin. She said she investigated the situation and is confident that the problems exist.
The complaint is not valid and the state has not and does not coerce patients into participating in studies, said Doug McBride, spokesman for DSHS.
Before they closed for lack of funding in 2003, the state had research units attached to its mental hospitals in San Antonio and Terrell, east of Dallas, McBride said. Some research continues at hospitals around the state, but researchers from drug companies or any other organization are not allowed to use patients without their permission, he said.
“The implication is that somebody was using patients in mental hospitals as unwilling and unwitting guinea pigs, and that is not the case,” McBride said.
Peel said some patients who were involuntarily admitted to state hospitals were told they could have their admission status changed to voluntary if they agreed to participate in drug studies. Peel, a psychiatrist, questioned whether patients admitted involuntarily are alert enough to make such decisions.
Patients are never released from a state mental hospital unless they are medically ready to leave, regardless of whether they have been in studies, McBride said.
Peel also alleges that researchers paid by drug companies were allowed to “go fishing” for test subjects by looking at patient files without their permission.
“What was clearly in the records of several of the studies was they allowed drug company representatives to read people’s charts and sit in on rounds, the treatment team meetings,” Peel said. “That’s a complete outrage.”
McBride said he does not know whether drug companies are allowed access to patient files without explicit permission from patients. Some researchers may be able to look at patient files with identifying information withheld, he said.
“I don’t know the parts of every case,” he said. “I can tell you that if someone is looking at a medical record for a patient then all the “I”s have been dotted and the “T”s have been crossed as far as honoring confidentiality requirements and research requirements,” he said.

Granholm, CyberMichigan Initiate To Design And Implement Statewide Health Data Network

Creating a statewide health information network, promoting quality health care, and protecting patient privacy are goals at the top of the list for hundreds of stakeholders at Lansing’s Kellogg Center, brought together on Wednesday at the urging of Michigan Governor Jennifer M. Granholm.

Health care providers and purchasers, employers, health plans, patient advocacy groups, technology vendors, labor, and government officials are carrying out a charge from Michigan Gov. Granholm and other federal health officials to create a common and collaborative framework that will eventually foster an interoperable Michigan Health Information Network (MHIN).

“These 300 stakeholders — who come from all walks of both the health care and information technology industries — have banded together for the first time to build the foundations of a statewide health information network that will ultimately bring our Michigan health care system into the 21st century,” Granholm said.

The MHIN will eventually enable medical records to move electronically with patients statewide, improving quality of care. The Michigan Department of Community Health (MDCH) and the Michigan Department of Information Technology (MDIT) are providing guidance and leadership for this important gubernatorial initiative.

“The need for a coordinated health information network has never been more important,” said MDCH Director Janet Olszewski. “Banking, manufacturing, and virtually all other industries have utilized information technology to expedite processes, improve quality, and garner efficiencies. Health care in Michigan needs to make the same important leap forward.”

The stakeholder group was formed to find ways to best use technology to improve health care quality, increase patient safety, reduce health care costs, and enable individuals and communities to make the best possible health decisions.

“As partners in this initiative, we have an opportunity to make a difference,” said MDIT Director Teri Takai. “Together we can find the best way to realize the promise of information technology to improve health care quality, service, cost and efficiency.”

CyberMichigan, and its parent organization, Altarum Institute, also joined Michigan officials in launching the MHIN. The nonprofit Altarum received a federal grant to facilitate this initial design activity.

“The goal of the MHIN,” said CyberMichigan President Karen Bantel, “is to set in place a common vision and process for how we want to exploit the promise of health information technology in Michigan and, ultimately, ensure that all Michiganians benefit from the higher quality, more accessible and more cost-effective care that such innovations as the electronic medical record can bring.”

“There are a number of very exciting local health IT initiatives in the state of Michigan,” Bantel said. “One of the principal aims of the MHIN is to ensure that, as these initiatives multiply across the state, they are bound together by a common understanding of how data is to be shared, when it is to be shared and with what privacy protections it is to be shared.”

Altarum Institute, based in Ann Arbor, is a nonprofit research and innovation institution that accelerates transformational change in health and healthcare, government and business enterprise systems, national security and environmental management.

City Orders Labs to Submit Data From Tests of Diabetics

As part of a broad new effort to better understand how diabetics manage their illness, the New York City Board of Health is ordering laboratories to pass along detailed information on individual tests that measure blood sugar levels to the city’s health department.

It is the first such reporting and tracking effort in the country, and it is being closely watched by public health officials nationwide wrestling with ways to better control the epidemic of diabetes.

An estimated 520,000 adult New Yorkers have been diagnosed with diabetes, according to the health department. It is thought that an additional 265,000 New Yorkers have diabetes, but do not know it. It was the fourth-leading cause of death in the city in 2003, the first time it made it into the top five.

Diabetics must control their blood sugar levels to prevent serious complications from the disease. The city wants the laboratories to report information from what are known as A1c tests, which are more detailed than the daily blood sugar tests patients perform on themselves. In the A1c tests, which diabetics are supposed to have done two to four times a year, a doctor is able to measure the average amount of glucose in the blood over a period of months.

By gathering data on the tests, the city hopes to coordinate intervention programs. Within six months, officials hope to use the information to reach out to local doctors and, in some cases, patients, to urge lifestyle changes and other measures to better control the disease.

“We’re confident that this measure will help people with diabetes live longer and healthier lives,” said Dr. Thomas R. Frieden, the city health commissioner.

While laboratories have long been required to pass along patient information on infectious diseases like hepatitis, this is the first time public health officials are trying to use similar techniques to control a chronic disease.

However, some critics of the effort worry that it is an invasion of patient privacy, especially since people will not be given the chance to opt out of having their information collected. There is also a fear that the information could find its way into the hands of insurance providers, who could, in turn, use it to discriminate against patients.

“I am shocked and dismayed to hear this news about A1c blood test results being given to the health department without patient knowledge or consent,” said Robin Kaigh, a New York lawyer who has tracked medical privacy issues. She added, “In addition, this landmark step will cause other databases of sensitive patient information or disease registries to be seriously contemplated in the future.”

In response to such concerns, Dr. Frieden said, “The utmost care will be taken to keep this information secure and confidential while we work toward improving patient care.”

The health department, whose board voted unanimously yesterday to begin the program, hopes to collect data on at least 90 percent of those diagnosed with diabetes.

If the effort is successful, the department would collect and analyze data on roughly 500,000 patients, which would require a massive commitment of time and resources.

While many laboratories already have electronic filing systems that would make it easy for them to pass along the information, the city expects to finance the added cost of compiling the data, estimated at $1 million a year. It hopes to get more money for intervention programs through a combination of private and federal sources.

I’ll have a loaf of bread, milk, and a flu shot

The company that radically reshaped the retail industry is getting into the healthcare business.
Wal-Mart is experimenting with ways to provide outpatient medical services to its millions of customers by opening walk-in clinics in about a dozen stores. The move by the $285 billion corporation is part of a broader trend that could significantly change the way many Americans get basic healthcare.
Target has opened 12 clinics in Minnesota and Maryland stores, staffing them with nurse practitioners who treat sore throats, earaches, and other minor ailments. The CVS pharmacy chain is aggressively rolling out similar clinics, with about 35 so far in cities like Atlanta, Nashville, and Seattle. Rite Aid, a national drugstore chain, and Duane Reade, a New York pharmacy chain, are setting up pilot programs for similar clinics. And MinuteClinic, a Minneapolis healthcare firm that leases space from Target and CVS, plans to expand to another 100 to 200 retail stores next year.
Janine Charles is already a believer in big-box healthcare. She thought she had the wrong address when her search for a doctor led to the parking lot of a Super Wal-Mart in Orlando recently. Charles, who had a sore neck, had called her insurance company to locate a walk-in clinic. After hunting around, she finally discovered the clinic was inside Wal-Mart, in a tiny space that was formerly a video arcade.
”I was really skeptical,” Charles said. ”I mean, Wal-Mart?”
Her visit turned out to be convenient, fast, and reasonably priced — $90 for an exam and an injection of muscle-relaxant medicine. The same treatment costs up to $200 at a doctor’s office and more than $500 at a hospital emergency room. Like those places, the Wal-Mart clinic accepts most major health insurance plans.
”It’s all about convenience,” said Dr. Grant Tarbox, medical director of Solantic, a for-profit Florida healthcare chain that leases the former video arcade space from Wal-Mart and operates the clinic. It is staffed by two doctors and offers services that range from a test for strep throat to X-rays for an injured ankle. Patients with more serious conditions are referred to primary care physicians or emergency rooms.
Doctors around the country say they worry about the quality of care that can be delivered in such a setting, particularly when the treating physicians don’t have access to a patient’s medical and pharmaceutical history.
Demand for lower-cost, convenient care is expected to grow as insurance companies and employers, trying to minimize premium increases, move employees to insurance plans with high deductibles. Such plans shift more out-of-pocket costs to patients, making them more likely to shop for lower-priced basic care.
Meanwhile, faster procedures and an increase in the number of nurses trained to provide in-store care have the potential to transform basic healthcare delivery, said Clayton M. Christensen, a Harvard Business School professor and author. The emergence of nurses and clinics in retail stores is a ”disruptive innovation,” he said.
”When you can unambiguously diagnose the condition, then a rules-based therapy can be prescribed and you don’t need a Harvard-trained doctor,” Christensen said. ”Quality is defined on how fast can I get what I need. Speed and convenience and price begins to matter a lot.”
Wal-Mart, which already offers an array of in-store services in many of its 3,700 US stores — including eye care, banking, and hair salons — has not determined exactly how it will provide healthcare on a wider scale. The Orlando Super Wal-Mart is one of a dozen stores around the country offering possible models. Some feature clinics with nurse practitioners instead of doctors, said Wal-Mart spokeswoman Sharon Weber. The company has not yet announced if it plans to locate clinics in other parts of the country.
The appeal to consumers is obvious. In Orlando, while shoppers pick up blue jeans and automobile floor mats, they can also have a child’s infected ear diagnosed and purchase prescription antibiotics.
They can receive care on weekends and until 9 p.m. on weekdays, when most primary care physicians’ offices are closed. The clinic at the Orlando store was even open on Thanksgiving Day and treated half a dozen patients, including a man who experienced stomach problems after his holiday meal.
The store records tens of thousands of transactions at its 29 check-out counters every week. However, Weber said, the idea behind the clinics is not to increase business, but to provide existing customers with another service. ”If it brings more traffic in, that’s great,” she said. ”It’s icing on the cake.”
MinuteClinic, the company that leases space in Target and CVS stores, is run by the former chief executive of the Arby’s fast-food chain, Michael Howe, who also worked for KFC. MinuteClinic’s motto: ”You’re sick. We’re quick.”
The business manager for the clinic at the Super Wal-Mart in Orlando, John Bernet, is a veteran of Waffle House, a chain with 1,500 restaurants in 25 states. He has found that keeping customers happy by serving them syrupy breakfasts is not so different from satisfying them with speedy X-rays. Solantic was attracted by his experience in managing multiple stores, Bernet said.
Simple pricing is a crucial part of the in-store healthcare formula. Visitors to the Wal-Mart clinic can study a posted list of prices and procedures that is much like the roster of services displayed at a Jiffy Lube.
It costs $65 to see a doctor, plus additional fees for tests and procedures. If patients know in advance what they need, they can select a service from an ”a la carte” menu. For instance, a cholesterol test is $30 and a child’s sports physical is $25.
The 430-square-foot clinic in Orlando has two small examination rooms. When there is a wait, a medical assistant gives patients beepers so they can shop and be notified when the doctor is available.
Marie and Sal Martinez recently brought their 2-year-old son Michael to the clinic for a $20 flu shot. During the visit, they also picked up fluorescent light bulbs, stuffing and pies, plus a ”War of the Worlds” DVD.
A week later, Marie was back with Michael, who has asthma. He seemed feverish, she said, and worried that he might have pneumonia, but the doctor ruled it out.
After Michael’s wails subsided, Marie explained why she chose the Wal-Mart clinic. ”We’re new to the area, and we don’t have doctors yet,” she said. Unlike Janine Charles, who initially had misgivings about being treated at the store, Martinez said the clinic’s association with Wal-Mart made her confident in the quality of care.
”It’s so much better than the emergency room,” she said.
But some physicians worry that easy access will trump quality and pose risks for patients.
”It’s convenient and expeditious for certain things, but it doesn’t replace a medical home where your records reside, where all your consultations come back to, where someone can help you navigate the healthcare system,” said Dr. Larry Fields, president of the American Academy of Family Practitioners.
Health clinics in chain stores will certainly reduce the ”inconvenience costs” of going to the doctor, such as losing a half day of work by sitting in a waiting room, said Dr. Richard Marshall, medical director of Harvard Vanguard Medical Associates, a large group practice in Boston. ”On the other hand,” he said, ”I think it would be an incredibly poor system for managing a chronic condition, because chronic conditions require long-term monitoring.”
Weber, the Wal-Mart spokeswoman, said the retailer is not trying to replace a patient’s regular physician.
”We see it as a complement to primary care,” she said. ”A lot of calls that would come into these clinics might be calls that would come into an emergency room.”
Tarbox, the Solantic medical director, defended the quality of the clinics. Solantic’s doctors are board-certified by the state of Florida. The two young doctors who work in the Orlando Wal-Mart — Sangeetha Polasa and Ajay Sood — received their medical degrees outside the United States; Polasa in India and Sood in the Dominican Republic. They recently completed residencies in family medicine at Florida Hospital, a multihospital nonprofit chain. Solantic pays them an hourly wage, which it would not disclose.
The clinic doctors routinely advise patients to establish relationships with primary care physicians, Tarbox said. ”This is a partnership. We’re not stealing from anybody,” he said.
But the potential for turf wars with primary care physicians will probably push retail stores toward the use of nurse practitioners instead of doctors, said Regina Herzlinger, a professor of business administration at Harvard Business School.”We have this in the rest of our economy. We have fast-food outlets. We have 7-Elevens. We have places that have a limited array of goods and services that are hugely convenient and usually relatively cheap,” she said. ”It’s what you and I want.”

IRS proposes tighter privacy rules

The IRS has proposed guidelines on the disclosure and use of income tax filer’s information by tax return preparers to strengthen privacy in the era of electronic filing.

Tax return preparers may not disclose or use tax return information for purposes other than tax return preparation without the knowing, informed and voluntary consent of the taxpayer.

IRS drafted its existing regulations in the early 1970s before the advent of many business practices and technology uses that support the electronic preparation and transmission of tax returns by preparers.

The proposed regulations,,id=151368,00.html broaden the definitions of “tax return preparer” and “tax return information,” revise the manner and form of obtaining taxpayer consent to use or disclose tax return information, and add a requirement to obtain taxpayer consent before preparers send tax return information offshore.

“Safeguarding of tax return information is critical. Americans ought to know when their tax returns are being outsourced and prepared abroad,” said IRS commissioner Mark Everson in a statement.

A tax return preparer who hires contractors that will need access to tax return information to repair computers or data files would have to notify those contractors that they will also be subject to the privacy restrictions, IRS said.

Rep. Ed Markey (D-Mass.) first raised the privacy concerns related to outsourcing tax preparation services in early 2004, according to Everson.

“This requirement should help ensure that taxpayers retain control over who gets access to sensitive personal information about their finances, since consumers are unlikely to agree to have their tax returns sent to countries with weak privacy protections,” Markey said.

The proposed regulations are open to public comment for 90 days after their publication in the Federal Register. The IRS will conduct a public hearing on the proposed regulations April 4, 2006.

Senate Wants Med Data High-Tech, Portable

People could carry their medical records around their necks or on key chains through technology being encouraged in a bill passed Friday by the Senate.

“When they go to the doctor’s office they won’t have to take that little clipboard and figure out whatever it is that they can remember about their health,” said Sen. Mike Enzi, R-Wyo.

The Wired for Health Care Quality Act encourages the Health and Human Services Department to form a public-private partnership to identify ways to streamline the health care system’s information technology. Hospitals and other health care providers could apply for grants to help them implement new technologies.

A system that makes patient records available instantly also would reduce medical errors, said Sen. Edward Kennedy, D-Mass., one of the bill’s nearly 40 sponsors.

It would “bring a health care system really into the modern century through information and technology,” Kennedy told reporters. “This can have a profound impact in terms of saving lives.”

The bill passed the Senate on a voice vote. The House is considering two similar measures.

Dr. Deborah Peel, president of the watchdog group Patient Privacy Rights, complained that the bill doesn’t include enough protections to keep personal information out of the hands of people who shouldn’t have it — such as employers, who could use it to discriminate against employees and potential hires.

“There’s no recognition of every American’s fundamental right to make a decision as to who can see medical information about them,” she said. “The point is that patients want to be asked.”

Peel said patients should be allowed to “segment” their information — or request that some of it not be made electronic or that certain electronic files be shared only with a few people.

Kennedy and Enzi said their bill provides plenty of built-in protections.

About 10,000 Americans have already made their health records electronic and accessible anywhere via the Internet with a free online service. And 60 people have had computer chips implanted into their arms to provide access to their electronic medial records, according VeriChip Corp., a Delray Beach, Fla., company that received Food and Drug Administration approval last year to market the chips.

Doctors have been slow to join the digital revolution. A RAND Corp. study published this year found that as of 2002 only between 10 percent and 16.4 percent of the nation’s physicians had adopted electronic medical record technology.

Sens. Debbie Stabenow, D-Mich., and Olympia Snowe, R-Maine, have their own legislation that would provide $4 billion in grants and tax incentives for health care providers to invest in digitalizing health information.

“We recognized all along that once the system is recognized for its value the … funding will have to be put in place,” Enzi said. “Until you have a system that works you can’t do that.”

The bills are S. 1418 and S. 1227.

Groups urge patient control of records

In the wake of polls showing most Americans have privacy worries as their personal health data goes electronic, consumer groups want lawmakers to ensure that the ultimate control over medical records remains in the hands of the patient.
Congress is considering a proposal to build a national Health Information Network, but two patient groups — the Electronic Privacy Information Center in Washington and the Austin, Texas-based Patient Privacy Rights Foundation — told United Press International that the measure is still weak on privacy safeguards.
“There needs to be a firewall between employers and the medical information of its employee — I’ve seen mental health records used against people,” Dr. Deborah C. Peel, founder of Patient Privacy Rights Foundation, told UPI. “I’ve seen patients with sweaty palms, which many would not necessarily call shameful or disturbing, but it can be to that person, so we think the patient should decide what information should be shared.”
The groups say that the following protections should be included in the nascent health information network:
— The patient should determine who can see and use his or her medical records.
— The patient should not have his or her medical records seen or used by an employer.
— The patient should not be forced to give up privacy to get medical treatment.
Peel and Marc Rotenberg, executive director of EPIC, are also looking to Capitol Hill for help.
Rotenberg said the 21st Century Health Information Act, sponsored by Rep. Patrick Kennedy, D-R.I., is the only bill currently under consideration in Congress that allows people to opt out of being part of a national health database.
Patients have the option of allowing only designated healthcare providers to access their individually identifiable information concerning diagnosis and treatment of sexually transmitted diseases, addiction and mental illnesses.
“Our bill guarantees that individuals will be able to opt out of having their health information in health information networks. (It) requires that, for those who do choose to be in, they can restrict which providers see certain kinds of highly sensitive information; and (also) requires disclosures to Health and Human Services and affected consumers in the event of unauthorized access or other security breaches,” said Kennedy, a key supporter of health IT legislation in Congress.
“We need to ensure that the confidentiality and security safeguards are up to the challenges of an online, digital health environment. There are people who set up privacy vs. IT as if they’re in opposition — they’re absolutely not. IT can be much more secure than paper, but we need to make sure we’re building the protections in from the start.”
Health IT is the inevitable wave of the future, but reassuring a nervous public is a cornerstone to its success, the lawmaker said.
“Health IT can do away with that infuriating clipboard, save us the hassle and costs of unnecessary tests and procedures, and even save our lives,” Kennedy told United Press International.
“It can revolutionize healthcare, but only if Americans trust that their most sensitive personal information will be secure. There should be one simple principle embedded in any health IT legislation: Individuals control who sees their health information,” he said.
This year’s National Consumer Health Privacy Survey, conducted by Forrester Research for the California HealthCare Foundation, showed that one out of three Americans polled had privacy concerns as the nation moves to paperless medical records.
The survey also found that one in eight patients engages in behavior to protect personal privacy, such as asking their doctor to not record a health problem, going to another doctor to avoid telling their regular doctor about a health condition and avoiding medical tests.
The survey also found that one in four polled was aware of recent privacy breaches concerning credit-card information reported in the media.
However, despite their concerns, consumers generally had a favorable view of new health technology — 59 percent were willing to share personal health information when it could result in better medical treatment.

Physician works to heal flawed medical record-keeping

In April 2004, President Bush set a 10-year goal of equipping most Americans with electronic medical files and prescription drug records.

The ambitious initiative promises to improve the safety, quality and efficiency of health care nationwide, but it also faces major hurdles: chiefly, the enormous upfront costs involved and the need to radically transform the paper processes used in medical care today.

Heading up the monumental task is Dr. David Brailer, a medical doctor and researcher who has devoted much of his professional career to expanding the use of technology in health care. Brailer was working for a nonprofit research group in San Francisco when he was hired by the White House in August 2003 as a consultant to develop policy options for equipping all Americans with electronic health care records. The following May, he was appointed by the secretary of the Health and Human Services Department as the first national coordinator for health information technology where he will execute policies he helped create and encourage doctors and hospitals to embrace greater use of information technologies.

Although Brailer’s immediate staff is small — growing from 15 to 40 in the next year — hundreds of employees from 35 federal agencies are working on the initiative. Brailer’s not sure how long he’ll be overseeing the effort — for the past two years, he has been commuting to Washington every week from San Francisco, where his wife and 5-year-old son live. But he says he won’t leave until he’s sure his team is well on its way to fulfilling the president’s mandate.

Brailer discussed with Federal Times the benefits and challenges of the project, including his frustrations at working in a federal bureaucracy:

Q: What’s driving the need for this?

Brailer: A few things. First, we now for the first time really know how bad medical errors are. Secondly, there’s huge cost pressure. And finally, we have a consumer that’s becoming more and more sophisticated.

Q: How bad are the medical errors?

Brailer: They’re significant. At least 50,000 people die every year in a hospital from medical errors. At least 2 million Americans are injured every year from outpatient drug prescribing, and thousands of people die from that. So it’s big, it’s huge.

Q: How will information technology help reduce those errors?

Brailer: If the doctor prescribes a drug, the first thing [the technology] does is validate that it’s the right patient. The next thing it does is check the allergies, and it won’t allow the doctor to continue if the patient has an allergy. If the patient is taking a drug that has a dangerous interaction, it stops the doctor. Plus there’s no handwriting. The order gets transmitted right to the pharmacy. They don’t have to read the doctor’s writing to figure out what he or she meant. When [the medication] goes to the [hospital] nurse, they can bar-code scan the patient [identification] to make sure they’re giving it to the right patient. It fixes the whole system.

Q: How prevalent is the use of this type of technology now?

Brailer: Most of the surveys are kind of patchy and narrow. But our estimate from all the various patchwork studies is around 10 percent.

Q: What are the main barriers to expanding its use?

Brailer: Two big ones. One is cost. In health care we pay by the piece. If you were my patient, I would be paid for seeing you, depending on how long I saw you, and I would be paid the same amount if I made a mistake or if I didn’t. There’s no incentive for quality or incentive for efficiency. Health IT increases quality and efficiency, but it doesn’t increase the doctor’s bottom line.

The other one is know-how. These systems are complicated, not just technically. They’re about changing the way practices operate, changing the culture of practice, changing the way people communicate, the way decisions get made, the role of the patient. And that requires a lot of change management and organizational re-engineering know-how.

Q: So, what are some of your ideas for getting over those barriers?

Brailer: First, one single set of information standards, so information always means the same thing regardless of the doctor’s hospital, the clinic, the laboratory, the pharmacy. Secondly, we’re going to start certifying electronic health records [systems], so the doctor can have a lot more certainty and comfort that they’re buying the right product. Also, we’re working on developing new advances in privacy and security. This is ultimately about the consumer’s data, and we want to make sure their data’s protected.

Q: What will this mean ultimately for the consumer?

Brailer: They should have no worries that when they show up to their doctor’s office that their data won’t be there. If they’re evacuated from New Orleans or from the next place that has a catastrophe, their data goes with them. We learned with Hurricane Katrina that people were being saved from New Orleans and dying in shelters because the doctors there didn’t know what drugs they were taking. So we created in seven days a database that had all the drug data for most of the evacuees, and it saved a lot of lives.

Q: How much is it going to cost, and who’s going to pay it?

Brailer: It is expensive. There have been estimates of the cost of this ranging from $100 billion to $200 billion. But all the estimates of cost also are paired with an estimate of savings, and they show that over a decade it might cost $200 billion but the savings will be more like $700 billion or $800 billion. Every time somebody has a medical error, besides the fact that they could die — which is horrible in its own right — they lose their productivity. People don’t just die; they die after a month in the hospital. It costs us a fortune.

Q: How might the Federal Employees Health Benefits Program (FEHBP) serve as a model?

Brailer: It’s already started. In April, the first page of the Office of Personnel Management’s letter [to insurance companies] explaining what the government was looking for was about health IT and how important it was that health plans support local adoption of health IT among their doctors and hospitals. And that’s had a huge response. Every health plan’s paying attention to it. They’re all looking at their own programs, they’re gearing up to do things, they’re adding new programs, new efforts, they’re assessing what’s going on in their own markets. We’ll do another turn of that [next April] to be able to say . . . here’s some of the criteria you should judge this [expansion of IT] with. I think FEHBP is going to be a big driver of this.

Q: Are some federal programs already forerunners of this?

Brailer: The Veterans Affairs Department has been using a fully automated paperless record in its hospitals and clinics for 10 years. They were one of the early movers. Once people go into the VA, basically, the VA bears the cost of their care from then to the end of time. Therefore it’s in the VA’s interest to put in investments to lower costs. But if you look at the typical hospital, that’s not how it works. They just get paid when someone comes through the door, so it’s in their interest to have people come more often.

Q: How has your experience been working in a bureaucracy like this? What surprised you about it, either good or bad?

Brailer: I’ve really been impressed with how good federal people are just across the board. Whenever I want a specialist on some kind of large-scale security architecture, I can find some of the best in the world working for the federal government. Negative surprises are — the list is so large we could spend a lot of time on it. In health care, the government only has one purpose in general, which is to regulate the market, create mandates. I find that to be one of the real problems with health care. I came in to drive a market-based agenda and I’ve been fighting uphill because it’s just a regulatory environment. If you go around this building, people, when they think of doing something with health care, they think of a regulation. If we want to have a freer market, it has to start with the government . . . starting to free up the stranglehold of regulations on the market that keep it from having innovation.

Q: This is a 10-year effort the president outlined. Do you expect to be here for the long haul?

Brailer: No. I never came in to do the long haul. I’m frankly shocked I’m still here. Not because I’m not having a good time, not because I don’t think it’s important, not because I frankly don’t love the people I’m working with. I just viewed myself as someone who would come in, get it set up, get the strategy worked out, get the team in place.

Q: How will you know you’ve done enough so the momentum will continue?

Brailer: I’ve got several criteria for that — when there’s a leadership team in place here in the federal government that can really drive it forward; when we have all of our external infrastructure in place, with the key drivers, the contractors, the entities who can do this on the outside; and when there is a really broad recognition that this is inevitable and it has to keep going.