Employers Battle Maladies That Drain Staff Productivity

Sneezing and headaches are starting to mean something to many employers.

Sensing that they’re hitting a ceiling in terms of passing along health costs to employees, some companies — often working with drug makers — have started tackling ailments that don’t necessarily lead to big medical bills or many missed days of work but often keep employees from getting much done when they are on the job.

Companies are analyzing the bottom-line effect of conditions such as seasonal allergies, migraines and stomach troubles, particularly when employees show up for work but operate at far less than 100%. That lack of productivity has been dubbed by health professionals as “presenteeism.”

Corporate efforts to improve employee health aren’t new. Some of the more established programs target severe health problems, such as heart disease and diabetes, on an individual basis via the insurer. Other efforts concern general wellness, stress and weight control. It is a newer tack, however, to address the lower tier of pesky chronic conditions.

Comerica, Dow Chemical, Bank One, a unit of J.P. Morgan Chase & Co., and International Truck & Engine are among companies that have put programs in place to help employees avoid or treat some of these seemingly smaller health conditions — or at least keep productive in spite of them.

“We have cut as much as we can cut in terms of cost-sharing and getting people to pay higher co-payments,” says David Groves, vice president of corporate health management at Comerica Bank. “The one opportunity that’s left is cost-avoidance.”

Results will be hard to measure. It’s easier to put dollar amounts on medical claims and sick days than it is to figure out the cost if a worker on the job isn’t accomplishing much. It’s also tough to decipher whether programs to help, say, headaches have really improved employees’ productivity. To evaluate presenteeism, companies are using employee questionnaires developed by researchers at universities including Harvard, Tufts and Stanford. The researchers have formulas to quantify the reduced productivity that comes when an employee has, for example, irritable bowel syndrome or back pain.

“These are, admittedly, rough-and-ready kinds of things, but in a world of having no information at all, it’s a heck of a lot better than having nothing,” says Ron Kessler, a professor at Harvard Medical School who helped develop one of the questionnaires and is now working with business groups in Chicago and Atlanta to study productivity at local businesses.

In late 2002, Dow Chemical surveyed its employees through a third party about several chronic ailments, including allergies, arthritis, back and neck problems, depression, migraines, gastrointestinal issues, diabetes and heart problems. The surveys show many more employees with the problems than the company would have been aware of by looking at insurance claims alone, says Catherine Baase, the company’s director of health services. This year, Dow is implementing a broad effort to try to tackle the problems and encourage employees to address them. Among several early steps, the company plans to reveal the aggregate survey results to doctors and hospitals in communities where many of its employees live, asking where there could be improvements in employees’ care, Dr. Baase says.

The trend is also leading employers to develop closer relationships with drug makers. Novartis AG, maker of Zelnorm, a drug for irritable bowel syndrome, provided funding for a Comerica study to determine the prevalence of IBS among employees. Pfizer Inc., maker of painkillers Celebrex and Bextra, meanwhile, is supporting a study that the bank is doing on arthritis, according to Comerica. Merck & Co. provided funding for Dow Chemical’s work, Dr. Baase says.

At Bank One, one of the earlier companies to work on this issue, a study of allergies at the company has led to educational programs that, among other things, encouraged employees to take antihistamines that are nonsedating, says Wayne Burton, a wellness and productivity executive at J.P. Morgan Chase.

Merck, Schering-Plough and Eli Lilly & helped pay for the research on allergy problems at Bank One, Dr. Burton says. Schering-Plough, which markets nonsedating antihistamines Claritin and Clarinex, helped fund Bank One’s study to help businesses understand “the far-reaching impact of allergies in all environments and activities,” spokeswoman Julie Lux says.

Creating awareness of the health problems and their costs benefits employers as well as the drug makers that sell potential treatments, says Sean Sullivan, chief executive of the Institute for Health and Productivity Management, a nonprofit that’s trying to address presenteeism and other health issues for employers.

Comerica surveyed its employees and found that about 40% of respondents said they suffered from irritable bowel syndrome, which can involve abdominal discomfort, bloating or diarrhea. Extrapolating from that, it was estimated that the problem cost the company at least US$8 million a year in lost productivity, Groves says. The surveys were conducted through a third party to ensure employee privacy, Groves says.

Comerica now provides written materials for its employees about IBS and has sponsored physician seminars to educate workers about how to recognize and deal with it through their living habits, diet and possible medications. The company has asked insurers to explore ways to encourage employees to get medical care that could improve productivity. One option would be to lower co-payments on drugs for a condition a company is concerned about, Groves says.

Medical Privacy vs. Health Care Quality?

{We believe this interpretation of HIPAA is wrong and that the authors’ position violates medical ethics requiring patient consent before use or disclosure of their medical records. ~ Dr. Deborah Peel, Patient Privacy Rights}

ew research reveals a clash between two of the biggest issues in health care today: protecting individual patients’ privacy and improving the quality, safety and cost of medical care for all patients.

In a paper published in the Archives of Internal Medicine, researchers from the University of Michigan Cardiovascular Center report how their research on heart attack care has been hampered by the national medical privacy regulations under a law known as HIPAA, which took effect two years ago last month.

In all, they write, the changes needed to comply with HIPAA have led to a drastic drop — from 96 percent to 34 percent — in the proportion of heart attack survivors and chest pain patients who take part in follow-up surveys after they leave the hospital. The changes have also dramatically increased in the cost of performing the surveys, and skewed the data because certain kinds of patients are more likely to agree to participate.

Post-hospitalization surveys are crucial to helping quality-minded hospitals like U-M assess and improve their care. Patients’ names and other identifying details are removed before their information is entered into a database. Doctors can use the database to find out what treatments and preventive measures help patients most, and what factors worsen their chances. This information helps doctors improve care at their own hospital, and can be shared with others to help them improve too.

But HIPAA’s current language requires that even quality-improvement research using anonymous data requires a written authorization from patients before their medical records can be reviewed and before they can be contacted for follow-up phone surveys. HIPAA stands for Health Insurance Portability and Accountability Act.

The patient permission forms must comply both with the privacy regulations and another set of federal laws governing research — which means they are often several pages long and complicated. And HIPAA’s current language leaves large amounts of room for interpretation, meaning that some hospitals might take a conservative approach and not attempt quality-improvement research, or allow researchers access to medical information at all.

“We won’t solve safety, quality and cost issues in health care unless we do quality research, and our findings show that HIPAA, as currently written, has the potential to hinder that effort,” says senior author Kim Eagle, M.D., clinical director of the U-M CVC. “Privacy is crucial. But quality-improvement research aims to generate public benefit, and as a society we have to be careful that we don’t find ourselves on such a far extreme on one side of privacy protection that we actually paralyze our ongoing efforts to monitor and improve care.”

Adds co-author Edward Goldman, J.D., “This study demonstrates an inadvertent effect of federal privacy regulations on important research. In a far-reaching attempt to legitimately protect patient privacy, HIPAA has made it very difficult to do critical health care research where the results would not harm patient privacy in any way.” Goldman, U-M associate vice-president and deputy general counsel, advised the U-M Cardiovascular Outcomes Research and Reporting Program team on HIPAA-compliant research tactics.

In the newly published study, the research team reports that only one-third of 855 patients returned a mailed consent form that gave permission for a researcher to call them six months after their hospitalization for a heart attack or acute chest pain. Nearly 500 patients never responded, and 22 letters were returned as undeliverable. Fourteen patients answered by mail to state that they would not consent. The total consent rate was 34 percent.

Under the previous system of simply asking patients for their permission in a phone call, 96.4 percent of 1,221 patients agreed.

The lower participation rate with the HIPAA-compliant written consent means that the data collected would be less meaningful. The study also finds that patients who returned written consents were far more likely to be older, married and white than those who refused to consent or didn’t answer.

Even as participation dropped, the cost of working in a HIPAA-compliant way rose. Computing time, staff hours, office supplies and postage would cost $8,704.50 in the first year of a research project, and $4,558.50 per year after that, on top of the usual costs of the research.

The team conducted the study just before HIPAA privacy laws took effect in April 2003, but acted as if HIPAA were in effect. This allowed them to track which patients sent back their consent forms and which did not, and to call those patients for a verbal consent so they could conduct the survey.

Co-author Eva Kline-Rogers, M.S., R.N., N.P., the manager of the M-CORRP program, notes that those follow-up calls can make a major difference in the rate of consent. Usually, callers find that a patient has forgotten to send the consent form back, has mislaid it, or thought it was junk mail.

“We find that many people misinterpret the mailing, and think it’s something that it isn’t,” she says. “They ask us if they’ll have to come in for a blood drawing or an appointment, when all we’re asking for is permission to call them, ask them how they’re doing and put their anonymous data into a database. Once we explain it, it’s very rare for someone to refuse.”

In the time since the study was conducted, HIPAA interpretation at U-M has changed in such a way that M-CORRP staff are now allowed to call patients who have not returned their consent forms after a few weeks. They can ask if the form has arrived and to offer to send another if it has not. If asked, they can explain what the study involves, and can encourage willing participants to send their consent forms back so that a researcher can call them.

But still, Eagle and his colleagues worry that many other hospitals will not take this kind of proactive approach to interpreting HIPAA. “At every national meeting I go to, HIPAA compliance and its impact on research is discussed,” he says. “Interpretation is highly local, and the rules as written create such a range of interpretation that no one quite knows how to handle it. While we’ve been able to work with our legal office to make sure we’re protecting privacy, other institutions may interpret the same law so strictly as to paralyze outcomes and quality research.”

In all, Eagle and his colleagues hope that lawmakers can factor their data and other studies into deliberations about HIPAA’s impact on research. “The public’s welfare is served by studying and reporting on the quality of health care, and there must be a way, within the spirit of the privacy laws, to make that research less onerous,” he says.

The data analysis for the new paper was led by David Armstrong, B.A., a recent Cornell University graduate who worked as an M-CORRP intern for several summers. Other authors are U-M biostatistician Jianming Fang, M.D., cardiologists Debabrata Mukherjee, M.D., M.S., and Brahmajee Nallamothu, M.D., MPH, and former research associate Sandeep Jani, MPH.

Questions arise about records law

Though lauded as a standard-bearer for medical privacy nationwide, a federal law that took effect in April doesn’t seem to be doing Clif Poole much good.
The Vacaville resident was riding in an ambulance last May when the driver asked him about his medical history. When Poole asked what would happen to the information, he was told the county wanted it.
But according to a new federal laws that took effect this year, Poole thought the only people entitled to patient records – other than patients themselves – are those providing treatment or those paying the bill.
“Anyone else is not entitled to medical records,” he said. “The (county) does not need to know who this record is about.”
Whether Poole is right seems to be a matter of opinion.
But it’s certain the new Health Insurance Portability and Accountability Act creates more questions than it answers – especially when it comes to how local governments handle medical records.
One patient’s concern
Poole has had medical problems in the past and doesn’t mind talking about them.
But it bothers him the county is collecting personal data on its residents for no apparent reason. He’s concerned local governments could use patient records to look for criminal activity.
“I believe this is a very serious subject that few people are aware of,” Poole said. “I want it ceased and desisted, period.”
Poole brought his concerns to the Solano County Board of Supervisors, who oversee paramedic service in the county. So far, he’s received no reply.
Solano County EMS Director Michael Frenn said he has a “respectful disagreement” with Poole on the issue.
Medical records, including patient names, are needed to ensure residents get the treatment they need, Frenn said. Records also allow the county to survey residents about the quality of ambulance care.
“We have the overall responsibility and medical oversight for the entire EMS system,” Frenn said. “We’re not only entitled to the information, but it’s necessary to obtain it.”
Every ambulance ride generates four copies of a “patient care report,” one of which goes to Frenn’s office.
“All the information is kept in locked storage room and access is absolutely restricted,” he said.
Other California counties collect medical records, too.
Contra Costa County keeps them along with patient names, said Art Lathrop, the county’s EMS director.
EMS agencies need records to investigate complaints from patients and to monitor the quality of service, he said.
“I would suspect that it would be pretty common for EMS agencies to have those records,” Lathrop said.
The law on privacy
HIPAA, which covers other aspects of medical care delivery such as electronic record keeping, provides strict rules about who is entitled to confidential patient information.
But the laws are as complex as the nation’s tangled health care system, and opinions differ on who is entitled to what.
Although the act was passed in 1996, HIPAA’s privacy provisions didn’t take effect until April. Generally, it covers health-care providers, health-plan groups and insurance companies who pay for patient care, and other groups only partly involved with patient care.
Privacy groups argue the laws don’t go far enough.
Under HIPAA, consumers have the right to inspect and change their own medical records, and organizations must provide patients with their privacy policies and tell them whether their information has been disclosed to anyone else. But medical providers, for example, don’t need someone’s permission before disclosing his or her records to other covered entities.
Earlier this year, California’s Emergency Medical Services Authority decided EMS agencies that contract out ambulance services – such as Solano County – may receive patient data as a “trading partner,” as defined by HIPAA. But some say the situation raises concerns.
Under HIPAA, covered entities must disclose only the minimum amount of patient information that is needed to other entities.
Katharina Kopp, program manager for the Health Privacy Report, another nonprofit that supports medical privacy, doesn’t think an oversight agency needs patient names or identifiable information to do its job.
“From how it sounds, you might not need all that information to carry out that purpose,” Kopp said.
EMS providers have a reason to ask patients about their medical histories, they say, but EMS agencies must put in safeguards for protecting that information, said Tena Friery, research director of the Privacy Rights Clearinghouse, a nonprofit group that supports consumer privacy.
And counties shouldn’t use medical records to search for criminal activity such as domestic violence or drug use, she said.
“This is just another bit of concern,” Friery said.
How the records are used
There is some interest in using medical records to investigate cases of domestic violence in Solano County.
Ambulance crews are often the first on the scene following a domestic disturbance, District 1 Supervisor Barbara Kondylis said.
“People are more likely to open up to medical people,” she said. “When police arrive, everyone clams up.”
After hearing Poole’s concerns, Kondylis asked county staff for a report on the issue. But it doesn’t appear medical records kept by the county are being used to investigate domestic violence.
Patient care reports are sometimes subpoenaed if victims of domestic violence later recant their statements, said Timothy Baffico, a sheriff’s detective who works with Solano County’s Family Violence Response Team.
But records come from paramedics and hospitals, who are required under California law to report domestic violence incidents.
“If someone subpoenaed the information, we always redirect them to the provider of service,” Frenn said.
According to the EMS agency, officials perform audits on its ambulance records to ensure paramedics and hospitals respond in time and provide proper treatment.
The county has been keeping those records since 1990, Frenn said. But Poole’s concerns about privacy aren’t unreasonable.
“I think anyone should be concerned,” he said. “So to that extent, I understand.”
A case of confusion
It’s not easy figuring out how HIPAA regulations apply to EMS agencies.
Even those whose work revolves around ambulance care say HIPAA is confusing on the issue.
Paramedics, who provide treatment to patients, are allowed to keep patient information under HIPAA. They can also disclose information to public agencies with a health care oversight role, said Steve Wirth, an attorney with Pennsylvania law firm Page, Wolfberg & Wirth, which specializes in EMS law.
But HIPAA is “very ambiguous” in certain areas, particularly those applying to paramedic services, he added.
“The cost of compliance and nuances in details are very complex and unlike anything an ambulance service or other health care provider has had to do in terms of privacy,” Wirth said. “It’s created major costs and frustration from all health care providers.”
In other areas, emergency dispatchers and paramedic crews stopped broadcasting patient names on radio frequencies because of concerns over the new privacy law. That’s taking things too far, Wirth said.
Poole agrees HIPAA laws are confusing, but still has doubts about the county’s purpose with patient data.
If local governments’ role is oversight and they need patient records, agencies could link records using numbers rather than names, he said.
“While trying to be proper, (HIPAA) needs some cleaning up,” Poole said. “Nevertheless, it doesn’t give the county the right, in my estimation, to have my personal medical data.”
Reach Warren Lutz at 427-6955 or at wlutz@dailyrepublic.net.

Bush says technology will improve health care at Cleveland event

It was one of those cryptic messages physician’s offices are famous for: Your blood tests have uncovered a problem; please make an appointment to see the doctor.

But it would be two weeks before Patty McGinley’s doctor_Dr. Bob Juhasz of the Cleveland Clinic’s Willoughby Hills Family Health Center_would be able to see her.

A phone call to the office revealed that her cholesterol was the problem. But how high was it? Was McGinley, as she put it, “a little unhealthy or a lot?”

Seated next to President Bush at a forum at the Cleveland Clinic Thursday, McGinley talked about her dilemma and its resolution.

“I’m a worrier,” the 48-year-old Concord Township woman said. “I felt pretty helpless and concerned.”

Then she got an e-mail message from the Cleveland Clinic that included a link to her electronic medical records. In the message were not just her test results, but charts that showed where her results fell in relation to normal ranges of cholesterol and triglycerides.

“I went from feeling helpless to being in complete control,” she said. “It really empowered me.”

That’s what Bush wanted to hear. And he hopes millions more Americans will be able to say the same thing in the coming decade, as the health-care industry embraces technology to become more efficient, bring down costs and deliver better, safer care.

“Information is a liberating tool,” he told the invited crowd of doctors and medical professionals, adding that information technology “can save money and save lives.”

Bush used Thursday’s event to push other parts of his health-care platform: medical savings accounts; tort reform; getting generic drugs to the marketplace more quickly and allowing small businesses in different states to band together to offer insurance to workers.

But the focus of the event was technology.

Dr. David Brailer, Bush’s national health information technology coordinator, said the goal in the next 10 years is to have every doctor use a computer to record and read patients’ medical records, to order tests, to write prescriptions and to view images, such as X-rays or CT scans.

The real challenge, Brailer said, is creating connections between different – sometimes rival – hospitals, so that if people find themselves in an emergency room in a different city, their medical records will be readily available to doctors who have never seen them before.

That will improve safety, said Dr. Martin Harris, the Clinic’s chief information officer.

“A patient will never have to worry about receiving the wrong dose or an inappropriate medication simply because someone couldn’t read the handwriting on a piece of paper,” Harris said.

Bush chose the Cleveland Clinic to push his technology message because of the wide range of its electronic medical records. But Akron, Ohio, hospitals are doing some of the same things.

Both Akron General Medical Center and Summa Health System have systems that allow doctors to view patients’ charts electronically.

At Akron General, doctors are beginning to carry tablet-sized computers from room to room.

At Summa, doctors can check lab results and place prescription orders via a computer system that scans for allergies and drug interactions. Summa doctors soon will be able to access X-rays, CT scans and MRIs via wireless computer.

Sue Heiser, director of health information management at Akron General Medical Center, said the federal government’s role in this needs to go beyond a presidential event. The federal government must establish a standardized system that all hospitals can follow, she said, and there needs to be some government money behind it.

“These systems are not cheap,” she said.

In the budget he will send Congress next month, Bush will propose spending $125 million to test computerization of health records. That’s more than twice what is being spent in this budget year that ends Sept. 30.

Estimates have placed national costs as high as $276 billion over 10 years to equip hospitals with the necessary equipment.

Savings have been estimated at between $24 billion and $76 billion a year.

The issue of computerized medical records often leads to questions about privacy, but Harris, the Clinic information officer, said technology will actually improve privacy.

“If you left a medical record on paper in a room, how will you know who saw it? You can’t know,” he said. “When it’s in electronic form, when anyone logs on to the system, we know. We know who they are. We know where they are. We know what they were looking at and we keep a log of all that information.”

© 2005, Akron Beacon Journal (Akron, Ohio)

Distributed by Knight Ridder/Tribune Information Services.

Communities Adjust to Medical Privacy Laws

Practices which helped neighbors stay connected in this community of 1,200 and others like it across the country are largely gone — partly because of the nation’s new medical privacy laws under the Health Insurance and Portability and Accountability Act.
It used to be easy for Hope Weaver to comfort friends when they were in the hospital. If she didn’t hear that someone needed a visit by word-of-mouth, she’d simply pick up the newspaper, tune in her radio or look at the patient list posted in the hospital’s front lobby. “You like to send people a card or keep in touch with them,” the 79-year-old resident notes.

Designed to better protect a patient’s right to privacy, the sweeping overhaul of federal health care laws went into effect in April 2003. That same month, Antelope Memorial Hospital in Neligh shut off general access to its patients’ names.

The federal regulations “closed the openness that small communities have,” said Shirley Clinton, a hospital privacy officer for Antelope. Now, printing and broadcasting names of patients makes a hospital liable under the law if someone’s name is released without permission.

Clinton said HIPAA has helped in some ways. In the past, well-meaning people who didn’t have loved ones in the hospital could bother patients who did not want to be disturbed, she said.

But the changes still don’t sit well with some people in Neligh.

Gary Snodgrass, of nearby Clearwater, used to keep tabs on who was in the hospital as he listened to KBRX radio while driving his gravel truck for the Antelope County roads department. A list of people admitted and released was read, and hospitalized friends at least received a telephone call, Snodgrass said.

The new rules also upset Snodgrass’ 88-year-old mother, Lois Snodgrass, and many of her friends, who once watched the newspaper carefully for people they might visit.

“Even people I didn’t know too well, people from church, we’d send cards,” she said.

Mrs. Snodgrass benefited from the old policy, too. Eight years ago. she was in the hospital for about a month with complications from gall bladder surgery and other health problems.

“At that time, people could come and visit,” she said. “It helped make my stay a lot more pleasant.”

Now, word of mouth or announcements at church have to suffice if the wider community wants to know who is hospitalized.

The HIPAA regulations, which carry civil and even criminal penalties if violated, require doctors, hospitals, pharmacies and insurers to notify patients about the privacy rules, describe how their medical information may be used and explain patients’ rights under the new guidelines.

Unless patients insist on strict privacy, hospitals still can tell people who ask for patients by name what their general condition is, and hospitals can issue names of patients to clergy who want to visit ailing parishioners.

If patients don’t want their names or other information released, health officials cannot even acknowledge that those individuals are in the hospital.

Antelope Memorial is far from alone in stepping up patient privacy.

Robert Dockter, chief executive of a hospital and assisted living center in Eureka, S.D., said his facility stopped broadcasting patient names about three years ago, as patients in the town of 1,100 began opting out of being identified and HIPAA regulations loomed.

Rosemary Blackmon, a spokeswoman for the Alabama Hospital Association, said the practice of publishing names in that state began fading away even before HIPAA, largely because people became more protective of their privacy.

“Years ago, that was the practice,” Blackmon said. “Everybody in the world wanted to know who was in the hospital.”

Joan Wright, owner, editor and publisher of the weekly Neligh News & Leader, said the newspaper received a number of telephone calls after it ran a notice explaining that names of hospitalized residents no longer would be printed.

Townspeople complained, “‘My neighbor was in the hospital and I didn’t even know it,'” Wright said.

Copyright © 2005, The Associated Press

Role of Computerized Physician Order Entry Systems in Facilitating Medication Errors

ABSTRACT

Context Hospital computerized physician order entry (CPOE) systems are widely regarded as the technical solution to medication ordering errors, the largest identified source of preventable hospital medical error. Published studies report that CPOE reduces medication errors up to 81%. Few researchers, however, have focused on the existence or types of medication errors facilitated by CPOE.

Objective To identify and quantify the role of CPOE in facilitating prescription error risks.

Design, Setting, and Participants We performed a qualitative and quantitative study of house staff interaction with a CPOE system at a tertiary-care teaching hospital (2002-2004). We surveyed house staff (N = 261; 88% of CPOE users); conducted 5 focus groups and 32 intensive one-on-one interviews with house staff, information technology leaders, pharmacy leaders, attending physicians, and nurses; shadowed house staff and nurses; and observed them using CPOE. Participants included house staff,nurses, and hospital leaders.

Main Outcome Measure Examples of medication errors caused or exacerbated by the CPOE system.

Results We found that a widely used CPOE system facilitated 22 types of medication error risks. Examples include fragmentedCPOE displays that prevent a coherent view of patients’ medications, pharmacy inventory displays mistaken for dosage guidelines, ignored antibiotic renewal notices placed on paper charts rather than in the CPOE system, separation of functions that facilitate double dosing and incompatible orders, and inflexible ordering formats generating wrong orders. Three quarters of the house staff reported observing each of these error risks, indicating that they occur weekly or more often. Use of multiple qualitative and survey methods identified and quantified error risks not previously considered, offering many opportunities for error reduction.

Conclusions In this study, we found that a leading CPOE system often facilitated medication error risks, with many reported to occur frequently. As CPOE systems are implemented, clinicians and hospitals must attend to errors that these systems cause in addition to errors that they prevent.

INTRODUCTION

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? Top
? Introduction
? Methods
? Results
? Comment
? Author information
? References


Adverse drug events (ADEs) are estimated to injure or kill more than 770 000 people in hospitals annually.1 Prescribing errors are the most frequent source.2-5Computerized physician order entry (CPOE) systems are widely viewed as crucial for reducing prescribing errors2-3,6-17 and saving hundreds of billions in annual costs.18-19 Computerized physician order entry system advocates include researchers, clinicians, hospital administrators, pharmacists, business councils, the Institute of Medicine, state legislatures, health care agencies, and the lay public.2-3,6-10,12, 14-17,20-22 These systems are expected to become more prevalent in response to resident working-hour limitations and related care discontinuities23 and will supposedly offset causes (eg,job dissatisfaction) and effects (eg, ADEs) of nursing shortages.24-25 Such a system is increasingly recommended for outpatient practices (Box).

Box. Advantages of CPOE Systems Compared With Paper-Based Systems1-2,6-9,11, 13-15

Free of handwriting identification problems
Faster to reach the pharmacy
Less subject to error associated with similar drug names
More easily integrated into medical records and decision-support systems
Less subject to errors caused by use of apothecary measures
Easily linked to drug-drug interaction warnings
More likely to identify the prescribing physician
Able to link to ADE reporting systems
Able to avoid specification errors, such as trailing zeros
Available and appropriate for training and education
Available for immediate data analysis, including postmarketing reporting
Claimed to generate significant economic savings
With online prompts, CPOE systems can
Link to algorithms to emphasize cost-effective medications
Reduce underprescribing and overprescribing
Reduce incorrect drug choices

Abbreviations: ADE, adverse drug event; CPOE, computerized physician order entry.

RETURN TO TEXT

Adoption of CPOE perhaps gathered such strong support because its promise is so great, effects of medication error so distressing,circumstances of medication error so preventable, and studies of CPOE preliminary yet so positive.2126-28 Studies of CPOE,however, are constrained by its comparative youth, continuing evolution, need to focus on potential rather than actual errors, and limited dissemination (in 5% to 9% of US hospitals).29-36 Two critical studies2130 examined distinctions between reductions in possible ADEs vs actual reductions in ADEs; the former are well documented and often cited, but the latter are largelyundocumented and unknown. Studies of CPOE efficacy (17% to 81% error reduction) usually focus on its advantages2-3,6-11,14-16and are generally limited to single outcomes, potential error reduction, or physician satisfaction.283034-40 Often studies combine CPOE and clinical support systems in their analyses.30, 40-41

In the past 3 years, though, a few studies2126-28,30-31,33, 42-46 suggested some ways that CPOE might contribute to medicationerrors (eg, ignored false alarms, computer crashes, orders in the wrong medical records). Several decades of human-factorsresearch, moreover, highlighted unintended consequences of technologic solutions, with recent discussions on hospitals.32-33,42-44,47-52

We undertook a comprehensive, multimethod study of CPOE-related factors that enhance risk of prescription errors.


METHODS

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? Top
? Introduction
? Methods
? Results
? Comment
? Author information
? References


Design

We performed a quantitative and qualitative study incorporating structured interviews with house staff, pharmacists, nurses, nurse-managers, attending physicians, and information technology managers; real-time observations of house staff writing orders, nurses charting medications, and hospital pharmacists reviewing orders; focus groups with house staff; and written questionnaires administered to house staff. Qualitative research was iterative and interactive (ie, interview responses generated new focus group questions; focus group responses targeted issues for observations).

Setting

We studied a major urban tertiary-care teaching hospital with 750 beds, 39 000 annual discharges, and a widely used CPOE system (TDS) operational there from 1997 to 2004. Screens were usually monochromatic with pre-Windows interfaces (Eclipsys Corp, Boca Raton, Fla). The system was used on almost all services and integrated with the pharmacy’s and nurses’ medication lists.

This study was approved by the University of Pennsylvania institutional review board. The researchers were not involved in CPOE system design, installation, or operation.

Data Collection

Intensive One-on-One House Staff Interviews. To develop our initial questions, we conducted 14 one-on-one house staff interviews. An experienced sociologist (R.K.) conducted the open-ended interviews, focusing on stressors and other prescribing-error sources (mean interview time, 26 minutes; range, 14-66 minutes).

Focus Groups. We conducted 5 focus groups with house staff on sources of stress and prescribing errors, moderated by an experienced sociologist (R.K.) and audiorecorded. Participants were reimbursed $40 (average group size, 10; range, 7-18; and average length, 1.75 hours; range, 1.4-2 hours).

Expert Interviews. We interviewed the surgery chair, pharmacy and technology directors, clinical nursing director, 4 nurse-managers, 5 nurses, an infectious disease fellow, and 5 attending physicians. All interviews, except 1, were privately conducted by the same investigator (R.K.).

Shadowing and Observation. During a discontinuous 4-month period (2002-2003), we shadowed 4 house staff, 3 attending physicians, and 9 nurses engaged in patient care and CPOE use. We observed 3 pharmacists reviewing orders. The researcher (R.K.) wore a faculty identification badge. Observation notes were freehand but guided by the interview findings.

Survey. From 2002 to the present, we distributed structured, self-administered questionnaires to house staff who order medicationsvia CPOE. The 71-item questionnaire focused on working conditions and sources of error and stress. We report here on 10 CPOE-related questions. We constructed the survey after our interviews and focus groups, leading us to provide separate answer optionsabout sources of error and sources of stress; add questions on CPOE as a possible source of error risk, an issue that emerged in our qualitative research; and quantify the frequency of these error risks. Not all CPOE-related error risks are amenable to survey questions. We have robust survey results on 10 of the 22 identified error risks; these findings are presented with the qualitative findings.

The sampled population (N = 291) included house staff who typically enter more than 9 medication orders per month. The target study population excluded 648 residents in services that seldom use CPOE: pathology, podiatry, occupational medicine, anesthesia, radiology, radiation oncology, ophthalmology, and dermatology.

More than 70% of the questionnaires were administered at routine house staff meetings. Other house staffwere located via departmental coordinators or pagers. Participants received $5 coupons for local coffee shops. Two hundred sixty-one house staff (88% of the target population) completed the questionnaire.


RESULTS

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Characteristics of the house staff were as follows. Of 94 interns contacted, 85 (90.4%) participated; of 96 second-year residents, 84 (87.5%) participated; and of 107 third- through fifth-year residents, 92 (85.9%) participated. The participating sample was 44.8% female, 66.3% white, and 32.5% were interns. Participants’ mean age was 29.6 years. These data did not differ significantly from characteristics of nonparticipants.

Our qualitative and quantitative research identified 22 previously unexplored medication-error sources that users report to befacilitated by CPOE. We group these as (1) information errors generated by fragmentation of data and failure to integrate the hospital’s several computer and information systems and (2) human-machine interface flaws reflecting machine rules that do not correspond to work organization or usual behaviors.

Information Errors: Fragmentation and Systems Integration Failure

Assumed Dose Information. House staff often rely on CPOE displays to determine minimal effective or usual doses. The dosages listed in the CPOE display, however, are based on the pharmacy’s warehousing and purchasing decisions, not clinical guidelines.For example, if usual dosages are 20 or 30 mg, the pharmacy might stock only 10-mg doses, so 10-mg units are displayed on the CPOE screen. Consequently, some house staff order 10-mg doses as the usual or “minimally effective” dose. Similarly, house staff often rely on CPOE displays for normal dosage ranges.

House staff regularly use CPOE to determine dosages (Table). In the last 3 months, 73% of house staff reported using CPOEdisplays to determine low doses for medications they did not usually prescribe; 82% used CPOE displays to determine range of doses (Table). Two fifths (38%-41%) used CPOE displays to determine dosages at least a few times weekly; 10% to 14% usedCPOE displays in this misleading way daily.

View this table:
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Table. Frequencies of Reported Medication Ordering Errors and Error Risks Involving the CPOE System (n = 261 Respondents)

Medication Discontinuation Failures. Ordering new or modifying existing medications is usually a separate process from canceling(“discontinuing”) an existing medication. Without discontinuing the current dose, physicians can increase or decrease medication(giving a “double” total dose, eg, every 6 hours and every 8 hours), add new but duplicative medication, and add conflictingmedication. Medication-canceling ambiguities are exacerbated by the computer interface and multiple-screen displays of medications; as discussed below, viewing 1 patient’s medications may require 20 screens.

Discontinuation failures “for at least several hours” from not seeing patients’ complete medication records were reported by 51% (Table). Twenty-two percent indicated that this failure occurs a few times weekly, daily, or more frequently.

Procedure-Linked Medication Discontinuation Faults. Procedures and certain tests are often accompanied by medications. If procedures are canceled or postponed, no software link automatically cancels medications.

Immediate Orders and Give-as-Needed Medication Discontinuation Faults. NOW (immediate) and PRN (give as needed) orders may not enter the usual medication schedule and are seldom discussed at handoffs. Also, because medication charting is so cumbersome and displays so fragmented, NOW and PRN orders are less certain to be charted or canceled as directed. Failure to chart or cancel can result in unintended medications on subsequent days or reordering (duplications) on the same day.

Antibiotic Renewal Failure. To maximize appropriate antibiotic prescribing, house staff are required to obtain approval by infectious disease fellows or specialist pharmacists. Lack of coordination among information systems, however, can produce gaps in therapy because antibiotics are generally approved for 3 days. Before the third day, house staff should request continuation or modification. To aid this process, reapproval stickers are placed on paper charts on the second day. However, when house staff order medications, they primarily use electronic charts, thus missing warning stickers. No warning is integrated into the CPOE system, and ordering gaps expand until noticed. Some unintentional “gaps” continue indefinitely because it is unknown whether antibiotics were intentionally halted. In the last 3 months, 83% of house staff observed gaps in antibiotic therapy because of unintended delays in reapproval. Twenty-seven percent reported this occurrence a few times weekly; 13%, once daily or more frequently (Table).

Diluent Options and Errors. A recent CPOE innovation requires house staff to specify diluents (eg, saline solution) for administeringantibiotics. A few diluents interact with antibiotics, generating precipitates or other problems. Many house staff are unaware of impermissible combinations. Pharmacists catch many such errors, but their interventions are time-consuming and not ensured.

Allergy Information Delay. CPOE provides feedback on drug allergies, but only after medications are ordered. Some house staff ignored allergy notices because of rapid scrolling through screens, the need to order many medications, difficulties discontinuingand reordering medications, possibility of false allergy information, and, most important, post hoc timing of allergy information. House staff claimed post hoc alerts unintentionally encourage house staff to rely on pharmacists for drug-allergy checks, implicitly shifting responsibility to pharmacists.

Conflicting or Duplicative Medications. The CPOE system does not display information available on other hospital systems. For example, only the pharmacy’s computer provides drug interaction and lifetime limit warnings. Pharmacists call house staff to clarify questionable orders, but this additional step costs time and increases error potential. House staff and pharmacists reported that this method generates tension.

Human-Machine Interface Flaws: Machine Rules That Do Not Correspond to Work Organization or Usual Behaviors

Patient Selection. It is easy to select the wrong patient file because names and drugs are close together, the font is small, and, most critical here, patients’ names do not appear on all screens. Different CPOE computer screens offer differing colors and typefaces for the same information, enhancing misinterpretation as physicians switch among screens. Patients’ names are grouped alphabetically rather than by house staff teams or rooms. Thus, similar names (combined with small fonts, hectic workstations, and interruptions) are easily confused.

Fifty-five percent of house staff reported difficulty identifying the patient they were ordering for because of fragmented CPOE displays; 23% reported that this happened a few times weekly or more frequently (Table).

Wrong Medication Selection. A patient’s medication information is seldom synthesized on 1 screen. Up to 20 screens might beneeded to see all of a patient’s medications, increasing the likelihood of selecting a wrong medication.

Seventy-two percent of house staff reported that they were often uncertain about medications and dosages because of “difficulty in viewing all the medications on 1 screen.”

Unclear Log On/Log Off. Physicians can order medications at computer terminals not yet “logged out” by the previous physician,which can result in either unintended patients receiving medication or patients not receiving the intended medication.

Failure to Provide Medications After Surgery. When patients undergo surgery, CPOE cancels their previous medications. Whensurgeons order new or renewed medications, however, the orders are “suspended” (not sent to the pharmacy) until “activated” by postanesthesia-care nurses. But these “activations” still do not dispense medications. Physicians must reenter CPOE and reactivate each previously ordered medication. Surgery residents reported that they sometimes overlooked this extra process.

Postsurgery “Suspended” Medications. Physicians ordering medications for postoperative patients whom they actually observe on hospital floors can be de

Doctors’ Journal Says Computing Is No Panacea

The Bush administration and many health experts have declared that the nation’s health care system needs to move quickly from paper records and prescriptions into the computer age. Modern information technology, they insist, can deliver a huge payoff: fewer medical errors, lower costs and better care.

But research papers and an editorial published today in The Journal of the American Medical Association cast doubt on the wisdom of betting heavily that information technology can transform health care anytime soon.

One paper, based on a lengthy study at a large teaching hospital, found 22 ways that a computer system for physicians could increase the risk of medication errors. Most of these problems, the authors said, were created by poorly designed software that too often ignored how doctors and nurses actually work in a hospital setting.

The likelihood of errors was increased, the paper stated, because information on patients’ medications was scattered in different places in the computer system. To find a single patient’s medications, the researchers found, a doctor might have to browse through up to 20 screens of information.

Among the potential causes of errors they listed were patient names’ being grouped together confusingly in tiny print, drug dosages that seem arbitrary and computer crashes.

“These systems force people to wrap themselves around the technology like a pretzel instead of making sure the technology is responsive to the people doing the work,” said Ross J. Koppel, the principal author of the medical journal’s article on the weaknesses of computerized systems for ordering drugs and tests. Dr. Koppel is a sociologist and researcher at the Center for Clinical Epidemiology and Biostatistics at the University of Pennsylvania School of Medicine.

The research focused on ways that computer systems can unintentionally increase the risk of medical errors. The study did not try to assess whether the risks of computer systems outweigh the benefits, like the elimination of errors that had been caused by paper records and prescriptions.

Yet Dr. Koppel said he was skeptical of the belief that broad adoption of information technology could deliver big improvements in health care. “These computer systems hold great promise, but they also introduce a stunning number of faults,” he said. “The emperor isn’t naked, but pretty darn threadbare.”

Another article in the journal looked at 100 trials of computer systems intended to assist physicians in diagnosing and treating patients. It found that most of the glowing assessments of those clinical decision support systems came from technologists who often had a hand in designing the systems.

“In fact, ‘grading oneself’ was the only factor that was consistently associated with good evaluations,” observed the journal’s editorial on computer technology in clinical settings, titled “Still Waiting for Godot.”

The principal author of the editorial, Dr. Robert L. Wears, a professor in the department of emergency medicine at the University of Florida College of Medicine in Jacksonville, said the message from the research studies was that computer systems for patient records, the ordering of treatments and clinical decision support have not yet shown themselves to be mature enough to be useful in most hospitals and doctors’ offices.

“These systems are as much experiments as they are solutions,” said Dr. Wears, who also holds a master’s degree in computer science.

The medical journal’s articles, according to some physicians and technology experts, tend to be too broad in their criticisms because the technology is still developing rapidly and some of the computer systems reviewed were old.

Still, even those experts conceded that the articles raised some good points.

“They are absolutely right that the people who design these systems need to be in tune with the work,” said Dr. Andrew M. Wiesenthal, a physician who oversees information technology projects at Kaiser Permanente, the nation’s largest nonprofit managed care company. “But the newer systems are designed more that way.”

Dr. David J. Brailer, the administration’s national coordinator for health information technology, termed the articles a “useful wake-up call,” though he said the findings were not surprising. In health care, as in other industries, he said, technology alone is never a lasting solution.

“The way health information technology is developed, the way it is implemented and the way it is used are what matter,” Dr. Brailer said.

But Dr. Brailer did take issue with the suggestion that the Bush administration is encouraging a headlong rush to invest in health information technology.

For the next year, he said, his policy efforts will be to try to encourage the health industry to agree on common computer standards, product certification and other measures that could become the foundation for digital patient records and health computer systems.

“We’re not ready yet to really accelerate investment and adoption,” Dr. Brailer said. “We have about a year’s worth of work.”

Dr. David W. Bates, medical director for clinical and quality analysis in information systems at Partners HealthCare, a nonprofit medical group that includes Massachusetts General Hospital and Brigham and Women’s Hospital, said careful planning and realistic expectations were essential for technology in health care.

“But the danger is if people take the view that computerized physician order entry and other systems are a bad idea,” said Dr. Bates, who is a professor at the Harvard Medical School. “That would be throwing out the baby with the bath water.”

Doctors, patients grapple with specifics of privacy rule

Howard Miller’s office is primed for privacy. The computers have plastic shields to ward off prying eyes. The patient files are coded by number, not name. The files hanging outside the examining rooms face inward to hide names and ages.
But sometimes Miller, a Center City internist, thinks privacy protections have gone too far.
“I have this one huge Italian extended family I’ve been treating for years,” he said. “One of them got sick and they were all calling to ask questions. And I couldn’t say anything to them because they weren’t on the list of contacts the patient had approved.”
That’s the only way Miller can comply with the patient-privacy rule of the federal Health Insurance Portability and Accountability Act of 1996, better known as HIPAA. The law profoundly changed how doctors talk to and about patients, as well as how patients themselves negotiate the health-care system.
But two years after the privacy rule took effect, there is still widespread confusion about who can give what medical information to whom and grumbling about bureaucracy and weak enforcement. There is an even deeper debate: Does the law protect or undermine patient privacy?
Tomorrow, that debate will be heard by the U.S. Court of Appeals for the Third Circuit in Philadelphia.
The Clinton administration required a patient’s written permission to release confidential information for “routine purposes,” such as treatment and payment. The Bush administration made consent optional. Now, patients simply sign a basic “notice of privacy practices.”
In April, U.S. District Judge Mary A. McLaughlin in Philadelphia ruled that the new provisions did not violate patient privacy and that the government had no legal responsibility to “act affirmatively to protect such rights.” Federal officials also said it would be too cumbersome to get consent every time an insurance company or medical specialist needed patient data.
Deborah Peel, for one, was appalled by the ruling.
“You can have your information disclosed for ‘routine purposes’ with no consent, no notice, no recourse. Excuse us, you have just eliminated a fundamental constitutional right,” said Peel, a psychiatrist in Austin, Texas, and a plaintiff in the case with Citizens for Health, a patient advocacy group, and others.
Without a privacy guarantee, patients might withhold crucial information from doctors, fearing it could be used against them by bosses, banks and others.
“The joke is that soon you’re going to call Domino’s Pizza and they’re going to know that they can’t send the extra cheese because you’ve got high cholesterol,” said plaintiff Janis G. Chester, who teaches psychiatry at Thomas Jefferson University.
The federal Health Insurance Portability and Accountability Act, which grew out of President Clinton’s failed effort to revamp health care, was designed to reduce fraud and prevent people from losing insurance when they leave jobs. But the privacy rule soon became the most talked about part of the law.
It required written consent to release test results, diagnoses and other information to doctors, dentists, hospitals, HMOs, group health plans, insurance companies, billing companies and others. The rule also gave patients access to their records and the right to find out when and to whom they have been disclosed.
In the long term, HIPAA was supposed to simplify electronic health records, which would save money. In the short term, however, it has created inconsistencies from one institution to another and cost millions for training and paperwork, lawyers and compliance officers.
Laurinda B. Harman, head of Temple University’s department of health information management, jokes that HIPAA stands for Huge Increase in Paperwork and Aggravation Act. “Is it hard to comply?” she asked. “No, but it’s one more form.”
Richard Campanelli, director of the federal Office of Civil Rights, which oversees HIPAA, believes the privacy rule has done exactly what it set out to do: give medical consumers power over their records. While acknowledging confusion early on, he said that most patients and providers now understand the boundaries of the law.
“People are very sensitive to their rights and they know that they have these rights,” he said.
Of the 10,785 HIPAA complaints received by the agency, more than 60 percent have been resolved without penalties and 38 percent remain under investigation. Critics note only 170 were referred to the U.S. Department of Justice for criminal investigation – and not a single civil penalty has been issued.
Kate O’Brien, 24, of Lindenwold, N.J., believes the law has only complicated matters for consumers. A program specialist for the Association for Retarded Citizens in Camden, she was told HIPAA would not permit her to get her medical test result over the phone.
“I had to drive all the way over from Pennsauken to Voorhees to pick it up,” she said. “Was it really necessary?”
The truth is: no. Doctors, with patient approval, can release information over the phone.
The act also has made it hard for some agencies to help those in their care.
Joe Young, deputy director of New Jersey Protection and Advocacy Inc., a medical advocacy group in Trenton, said that psychiatric hospitals sometimes refuse to contact family members when his mentally ill clients are in crisis – and cannot remember their medical history.
“It’s wrong to freeze out family members who may be able to provide assistance,” he said.
Still, many doctors acknowledge HIPAA has had some positive effects.
“It’s created a new sort of awareness in the office, even in the idle chatter between physicians and the nursing staff,” said urologist Al Ruenes of Central Bucks Urology in Warminster and Doylestown.
A few years ago, he said, doctors routinely left X-rays on light boxes, and it was not uncommon for a patient to overhear staff ask for “Mark Summer’s CAT scan” over the intercom.
Many researchers complain that they can no longer recruit patients directly from doctors’ records. They must rely on doctors for referrals.
“Most physicians are just too busy to do that,” said Roberta B. Ness, a University of Pittsburgh epidemiologist, who saw recruits for one study fall by half after HIPAA.
But at the University of Pennsylvania, oncologist Julia Draznin said, new patients now sign several consents at once, including one for research. No more time-consuming searches for study volunteers.
“Things are definitely getting better” with HIPAA, she said. “Common sense prevails.”
Contact staff writer Virginia Smith at 215-854-5720 or vsmith@phillynews.com.
HIPAA Myths and Facts.
Myth: One doctor’s office cannot send a patient’s medical records to another doctor’s office without patient consent.
Fact: No consent is necessary.
Myth: Doctors cannot communicate with patients by e-mail.
Fact: E-mails, with proper safeguards, are permitted.
Myth: A patient cannot be listed in a hospital directory without consent and the hospital cannot share that information with the public.
Fact: Hospitals may provide a patient’s name, location and general condition to the public unless the patient specifically opts out.
Myth: Clergy members are not entitled to information about hospitalized members of their religious affiliation unless they know the person by name.
Fact: Clergy are entitled to this information unless the patient objects.
Myth: Patient information cannot be shared with family members without patient consent.
Fact: Relevant information may be disclosed to relatives or friends named by the patient. In case of emergency or patient incapacity, the doctor’s “professional judgment” prevails.
Myth: Family members may not pick up a patient’s prescriptions.
Fact: Relatives or friends acting on patient’s behalf may pick up prescriptions, but some pharmacies may prohibit this on their own.
Myth: Patients can sue health-care providers for not complying with HIPAA privacy rules.
Fact: Patients cannot sue. They can file written complaints with the federal Office for Civil Rights.
Myth: Patients’ medical records cannot be used for marketing.
Fact: HIPAA permits the use of medical information for certain health-related marketing, such as a plan’s health-related products or alternative treatments.
Myth: If a patient refuses to sign a form acknowledging receipt of privacy practices, a doctor or hospital can refuse treatment.
Fact: The law does not allow this.
Myth: HIPAA makes hospital fund-raising almost impossible.
Fact: Hospitals, with patient permission, may use or disclose basic patient information for fund-raising, but patients must be given the option of declining future fund-raising communications.
SOURCE: The Health Privacy Project

Bill to create electronic health network passes

The Courier-Journal FRANKFORT, Ky. Kentucky will soon begin creating a statewide electronic health network allowing doctors, hospitals and pharmacies to share medical information about patients via computer.
The House passed Senate Bill2 97-0 yesterday, sending it to Gov. Ernie Fletcher, who has endorsed the legislation.
Such a network would take three to five years to develop.
The sponsor, Sen. Daniel Mongiardo, D-Hazard, said Kentucky will be the first state to move toward what President Bush has designated a national priority.
Under the bill, the state will begin developing a secure, “paperless” network that – with a patient’s permission – will allow health-care providers to share the patient’s medical information electronically.
Such a system will speed transmission of information, reduce errors and result in better care for patients, so-called “e-health bill” for several years.
The bill succeeded this year after Mongiardo gained support from Senate President David Williams, R-Burkesville.
The bill also was backed by top officials at the University of Louisville and the University of Kentucky.
Mongiardo said he was delighted with yesterday’s passage.
“I think we can make Kentucky the crossroads where health care, information technology and research meet,” he said.
Dr. James Holsinger, secretary of Health and Family Services and the state’s top medical official, said, “I believe this is a project whose time has come.”
SB2 authorizes a “Kentucky Healthcare Infrastructure Authority” to begin planning the network, with UK and UofL designated to lead the effort.
It also authorizes creating a board to oversee the work and conduct pilot projects.
The Senate has included $360,000 as start-up money, mostly to authorize two endowed chairs – one at UK and one at UofL – for experts to help create the system.
But no other money is included in the budget.
One of the goals of the authority would be to raise federal and private funds.
Most health providers already are computerizing their operations, so the state’s challenge will be to find a common system to use to share information, said Dr. Michael Karpf, UK executive vice president for health affairs.
UofL and UK officials who helped develop the legislation said they expect federal money to be available to pay for pilot projects.
Part of the move to e-health is being driven by the federal Health Insurance Portability and Accountability Act of 1996, better known as HIPAA, said Dr. Robert Esterhay, a UofL professor who is researching electronic health networks.
Federal authorities are promoting e-health as more efficient and more secure, he said.
Any system Kentucky creates would have to conform to HIPAA patient-privacy rules, Esterhay said. SENATE BILL 2 Sponsor: Sen. Daniel Mongiardo, D-Hazard (daniel.mongiardo@lrc.ky.gov)
Copyright (c) The Courier-Journal. All rights reserved. Reproduced with the permission of Gannett Co., Inc. by NewsBank, inc.

Willing the World to Listen

On March 1, 2004, my family and I huddled in a room at Columbia University Medical Center, awaiting the diagnosis of my then 2-year-old grandson. A physician entered and delivered the words we most feared: “He has autism.”

Thus, our family’s journey began?a long journey, still in its early stages, yet already more exhausting and frustrating than we could have imagined possible. We watched helplessly as a delightful, apparently normal toddler lost his ability to interact with the outside world. It was as if he’d been kidnapped or somehow had his mind and spirit locked in a dark hole deep within him. For a grandmother, this has been indescribably painful to witness. For his mother and father, it is heartbreaking.

Like anyone, I responded to the diagnosis with a frantic scramble for information. What I found was profoundly discouraging. We had so many questions: Which therapies should our grandson have? How many hours? For how long? Who can provide the best guidance? Unfortunately, we found out what thousands of families already know: there are no good answers.

The Wright family – just like every family in this situation – was left to assemble a team of specialists on its own. If you have a loved one with autism, you’ll try anything that might help. The difference between us and the average family is that we didn’t have to sell our house or take on a huge burden of debt to pay for treatment. And the costs can be staggering – well out of the reach of most people, even those with generous health-insurance coverage.

I was surprised to learn that autism is the most widely diagnosed developmental disability in the nation, affecting 1 in 166 children. You’d never suspect this from the resources devoted to the disorder. According to some estimates, autism research receives only $15 million per year from private sources, compared with more than $500 million for childhood cancers, muscular dystrophy, juvenile diabetes and cystic fibrosis?which, combined, are less common than autism.

To help close this gap in awareness and resources, my husband and friends have worked over the past few months to establish a new initiative dedicated to the more than 1.7 million people with autism in this country and their families, and to the additional 24,000 children who will be diagnosed this year. The project is called Autism Speaks, and we are up and running thanks to the overwhelming response from the autism community and friends like Phil Geier, former chairman of Interpublic, and especially Bernie Marcus, the cofounder of the Home Depot. Autism speaks … and it’s time for the world to listen.

One of the main goals of Autism Speaks is to develop a central database of 10,000-plus children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials. This will significantly reduce the costs of the major studies that will lead to concrete progress. At the same time, we will push for much-needed increases in public-sector and federal funding.

Every day, 66 children are diagnosed with autism. That’s nearly three per hour. Why, given the alarming incidence rate, has there been no comprehensive national effort focused on autism? Here’s one answer: such an effort must be driven by those with most at stake, the parents of autistic children. Yet these people?and I’ve met many in recent months?are exhausted. They are broke. And they are discouraged. It’s all they can do to get through the day, much less lobby Congress about funding.

Too many parents go to bed each night praying that one day their child will look them in the eye, smile and say “Mommy.” My daughter is one of them. My husband and I are launching Autism Speaks for her and for all the families stricken by this disorder. The journey that began a year ago is now a march. Many good people?perhaps you included?stand ready to join us. The pace is quickening, and God willing, we won’t stop until we have conquered autism?one child, one voice at a time.

Wright is the cofounder, with her husband, Bob, of Autism Speaks. Bob Wright is vice chairman of GE and chairman and CEO of NBC Universal. Learn more about Autism Speaks at autismspeaks.org or by calling 888-AUTISM-5.