DiversityNursing Blog

By Associated Press

Disabilities among U.S. children have increased slightly, with a bigger rise in mental and developmental problems in those from wealthier families, a 10-year analysis found.

Disadvantaged kids still bear a disproportionate burden.

The increases may partly reflect more awareness and recognition that conditions, including autism, require a specific diagnosis to receive special services, the researchers said.

Meantime, physical disabilities declined, as other studies have suggested.

The study is the first to look broadly at the 10-year trend but the results echo previous studies showing increases in autism, attention problems and other developmental or mental disabilities. It also has long been known that the disadvantaged are more likely to have chronic health problems and lack of access to good health care, which both can contribute to disabilities.

The researchers studied parents' responses about children from birth through age 17 gathered in 2000-2011 government-conducted health surveys. Parents were asked about disabilities from chronic conditions including hearing or vision problems; bone or muscle ailments; and mental, behavioral or developmental problems that limited kids' physical abilities or required them to receive early behavioral intervention or special educational services. Nearly 200,000 children were involved.

Results were published online Monday in Pediatrics.

Overall, disabilities of any kind affected 8 percent children by 2010-2011, compared to close to 7 percent a decade earlier. For children living in poverty, the rate was 10 percent at the end of the period, versus about 6 percent of kids from wealthy families.

The overall trend reflects a 16 percent increase, while disabilities in kids from wealthy families climbed more than 28 percent, the researchers found. The trend was fueled by increases in attention problems, speech problems and other mental or developmental disorders that likely include autism although that condition isn't identified in the analyzed data.

Declines in asthma-related problems and kids' injuries accounted for much of the overall 12 percent drop in physical disabilities. Better asthma control and treatment and more use of bike helmets, car seats and seat-belts may have contributed to that trend, said lead author Dr. Amy Houtrow, a pediatric rehabilitation specialist at the University of Pittsburgh.

The developmental disability increases echo what Dr. Kenneth Norwood, a developmental pediatrician in Charlottesville, Virginia sees in his medical practice.

"I'm routinely backed up six months for new patients," said Norwood, chairman of the American Academy of Pediatrics' Council on Children with Disabilities.

Norwood thinks there is more awareness of these conditions and that some, including autism, are truly rising in prevalence. Autism is thought to result from genetic flaws interacting with many other factors. Some studies have suggested these may include parents' age and prenatal infections.

Source: www.foxnews.com

By Karen Weintraub

Parkinson's disease is like a "rolling wave" of ever-changing symptoms, not a lightning strike of different events, says its most famous patient, the actor Michael J. Fox.

So when doctors ask for a list of recent symptoms, they miss a lot of the subtleties of the progressive disease.

Hoping to change that, the Michael J. Fox Foundation and Intel announced Wednesday that they are collaborating on a project to track Parkinson's patients 24/7.

Using a device like the popular FitBit (a wristband activity monitor), patients will be tracked over the course of their day, as their medication kicks in and wears off, as food hits their system, as their environment changes and as they sink into sleep. The data generated will be so enormous that Intel's digital expertise will be needed to make sense of it, both organizations said.

The information should lead to new insights into a disease diagnosed in about 60,000 Americans a year, leading to tremors, paralyzing stiffness and physical awkwardness, among other symptoms.

"The answers are within us," Fox said in an interview. "We just need to find a way to let people into our brains both literally and figuratively to help us figure this out."

The collaboration, which started with a small pilot trial of 25 people this spring, aims to measure patient gait, tremors and sleep patterns, among other metrics, and stream the data in real time to the cloud. Intel, which provided the servers and software to collect and manage the data, is also developing algorithms to help analyze it, said Diane Bryant, senior vice president and general manager of Intel's Data Center Group.

Former Intel CEO Andrew Grove has had Parkinson's since 2000, and initiated the discussion between the company and the foundation, Bryant said.

The company isn't disclosing how much it is investing in the project, but Bryant said that costs for this kind of effort have fallen dramatically in recent years. "Ten years ago it would have been ridiculous to consider" a project like this, she said.

The collaboration is Intel's first step into health care, but it likely won't be the last.

"It's a wonderful first step for us," Bryant said. Health care lends itself well to so-called big-data analytics, because there is so much information to collect on a patient, from symptoms to genetics to lab results.

Fox Foundation CEO Todd Sherer said doctors score the disease's severity based on how the patient feels during a visit – but symptoms can change minute by minute, from near normal to completely disabling.

"If the doctor is running 15 minutes late, the assessment could be completely different than if they'd seen the disease 15 minutes earlier," Sherer said.

Also, he said, sometimes patients minimize symptoms for their doctor, or time their medication so they'll perform well during the visit. "The doctor might say everything's doing great, and we'll hear from the spouse: 'You should have seen them yesterday.' "

The same problems also make research into the disease more difficult. It's hard for researchers to get a realistic view of whether a treatment is effective, if they only get occasional snapshots of a patient.

The new devices will therefore provide a much more realistic – and objective – view of the disease than has been possible before, Sherer said.

If shown effective during pilot studies, he said, the devices will likely be used both for clinical research trials – in which the patient data will be anonymous – and, say, for a week before a doctor's visit, to provide an update on a patient's disease.

Source: www.usatoday.com

By: American Profile

School nursing started out as a practical solution for Beth Mattey: The mom of three liked the hours. Now, 27 years later, she says it was the perfect career choice—creative, independent and full of meaning. “As Maya Angelou said, ‘People never forget how you made them feel,’” Mattey says. “That’s the connection that school nurses make.” We asked Mattey what parents might be surprised to know about her job—and their kids.

1. Sadness is one of the most common illnesses she sees in students. “Kids are anxious and want to do well,” she says, noting a 2012 National Association of School Nurses report that the top five health conditions of U. S. children are mental health- related, issues that school nurses spend about a third of their time helping students cope with.

2. Every kid should carry a water bottle. Dehydration is often the cause of headaches, another common complaint among kids, Mattey says. Also a culprit? Lack of sleep.

3. School nurses need to know your secrets. In addition to any chronic conditions your student is coping with, update your school’s nurse on any big family news like an illness, death or divorce. Your instinct might be to keep such facts private, but the nurse can offer your child valuable support.

4. Your kids aren’t eating the lunch you pack. “I often ask teens what they had for lunch, and they say, ‘Chips.’ We need to help them understand the value of nutrition and to make good choices,” Mattey says.

5. A “mental health day” is not a stress solution. Allowing your anxious teen a day off won’t get to the root of the cause. “If a kid is too stressed to go school, find out why,” Mattey says. “Is she being bullied? Did she not do her homework?”

6. Teens need vaccines. Make sure yours is up to date on the Tdap or tetanus, diphtheria, pertussis; meningitis—one at age 11, the second at age 16; and the HPV (human papilloma virus).

7. A school nurse can be a teen’s— and parent’s—best friend. Mattey sees herself as supporting students, physically and emotionally. After all, she’s there day after day, year after year. “School nurses provide a safety net,” she says.

Source: www.tauntongazette.com

By Meaghan O'Keeffe

Sometimes, being part of the nursing profession can feel exactly the same as being part of a family. You love it dearly, you can’t imagine your life without it, but there are lots of things about nursing (and family) that can drive the most balanced person completely nuts.

Deep down, you love nursing, even with all of its vein-popping, blood pressure elevating quirks.

Here is Scrubbed In’s list of things about nursing that drive nurses absolutely nuts, but we deal with anyway.

1. Call lights: Of course the purpose of call lights is to enable patients to get help when needed, but it’s hard not to get annoyed at the call light itself. It’s blinking, beeping, and taunting you because you just sat down to document. (See #2)

2. Documentation: For the love of all things nursing. Documentation is our greatest tool and the bane of our existence, all wrapped up into a flowchart, and an I&O’s chart, a nursing note, an incident report, a pre-anesthesia evaluation form, a…

3. (For our guys) Being called “male nurse:” For the men in our nursing community, hearing someone refer to them as a nurse, without “male” automatically attached, would be a breath of fresh air.

4. Body fluids: Nurses deal with body fluids all the time. It’s par for the course. But it’s not exactly something one wishes for. We don’t need to name them all. You’re well acquainted with most. They can really dampen your day. Pun intended.

5. Waving your ID to get into your bathroom at home: Many healthcare facilities have areas where you need to scan your ID to unlock the door. When you’ve tried that to get into your bathroom at home, it might be time to take a vacation.

6. Trying to use your fingerprint at the ATM: If you regularly use your fingerprint to get into medication and supply stations, you might find yourself trying to do the same at the ATM screen. Just hope that no one saw you.

7. Hearing a patient-alarm-like sound (outside of work): You’re out and about and someone’s cell phone ring sounds uncannily like an O2 sat alarm. Before you’ve had a chance to process, your pulse has quickened and you’re on high alert. Calm down, nervous system; you’re off duty today.

8. Patients who don’t take the full course of antibiotics: When a patient gaily reports that they stopped taking their antibiotics because they feel sooo much better, there’s a specific protocol you must follow. It involves closing your eyes, taking deep breaths and counting to 10 before calmly explaining the rationale behind completing the course in full.

9. Waking up at 5 a.m. on your day off: Finally, finally you can sleep in. You’ve been looking forward to it for days. But your brain seems determined to wake up as if you need to work today. At least you can stay in bed with your feet up.

10. Bringing a coffee to work, then drinking it cold four hours later: A hot cup of coffee at the start of your day is one of the simple pleasures of life. But did you really think you were going to drink it? You might at some point, it just may be more like iced coffee by then.

Your Turn

What drives you nuts about nursing?

Source: http://scrubbedin.nurse.com

ALSA

It may be warm in parts of the country, but some people aren’t drenching themselves in ice or cold water to cool down from elevated temperatures. A new phenomenon has hit the social media circuit – the “Ice Bucket Challenge.”

The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice.

Beverly, Mass., resident Pete Frates, started the “Ice Bucket Challenge” with his family on the social sites Facebook and Twitter.  Frates, 29, has lived with ALS since 2012, and he has worked with The ALS Association’s Massachusetts Chapter.  A former Division 1 college athlete with Boston College Baseball, Frates tirelessly spreads awareness of Lou Gehrig’s Disease.

This viral sensation, which has used the hash tag #IceBucketChallenge, has attracted thousands of followers, including Boston Bruins stars Brad Marchand and Torey Krug, who willingly dropped frozen ice on themselves and issued the challenge to others.

“This is a creative way to spread ALS awareness via social media and in communities nationwide,” said Barbara Newhouse, President and CEO of The ALS Association.  “We thank Pete Frates and his family for getting so many people involved in spreading the word about ALS.”

Other examples of the challenge can be viewed on the Team FrateTrain Facebook page.

Source: www.alsa.org

By JoNel Aleccia

By the time her third daughter was born last year, Gabriella McCann thought she was an old pro at handling new babies.

But nothing in her experience with Greta, now 6, or Stella, 3, could have prepared her for Elisa, who arrived missing a puzzling patch of skin on the back of one hand. Within 24 hours, that patch was followed by blisters that erupted on Elisa’s body — and stumped doctors who didn’t know what to make of the shocking condition.

“The baby was born and the whole world crashed,” recalled McCann, 40, a Minneapolis mom who was staying with family and friends in her native Palermo, Italy, when Elisa was born.

Within days, the problem was clear. Doctors in Rome diagnosed Elisa with a form of epidermolysis bullosa, or EB, a genetic disorder in which layers of the skin don’t anchor together properly, causing friction that leads to massive, painful blistering at the slightest scrape or bump. 

“They actually look like burn blisters,” McCann said. “She had blisters surrounding her fingers so that they looked like hot dogs in a bun.”

Today, however, 18-month-old Elisa’s fingers look almost normal. Her mother has taken off the gloves and wraps that covered her hands and feet and she’s even allowing the toddler to experiment with walking — even if it means she falls.

That’s because in May, Elisa became the 28th child enrolled in a ground-breaking clinical trial at the University of Minnesota that uses bone marrow from healthy donors — in this case, Elisa’s sister Stella — to repair the symptoms of the devastating disorder.

Led by Dr. Jakub Tolar, director of the university’s Stem Cell Institute, the trial begun in 2007 is still considered experimental but has become the treatment of choice for the most severe cases of EB, he said.

“This is one of the most difficult to treat disorders and a very painful disorder,” Tolar said. “Before we started, there was absolutely nothing that would change the outcome of these children.”

EB is caused by a defect in the genes that make collagen, a connective tissue that allows skin layers to adhere to each other, Tolar said.

“It’s a protein that makes loops that are like Velcro that attach the upper layer to the lower layer,” he said. “When that Velcro is missing, the layers slide against each other and cause blisters.”

About 20 in every 1 million babies born in the U.S. have EB, which comes in several forms and can range from mild to severe, experts say. That means between 25,000 and 50,000 people in the U.S., mostly children, are living with the condition. Left untreated, EB results in painful disfigurement and early death, typically before the age of 30. Earlier victims of EB often developed deadly skin cancer spurred by the rapid cell turnover the condition causes. 

Babies like Elisa, those born with severe EB, develop lesions everywhere: on their hands and toes, on their bottoms, in their mouths and throats. They’re often called “butterfly children” because their skin is so fragile — as fragile as butterfly wings, some say.

But when Elisa was born, McCann wasn’t interested in sentimental labels. Like many modern parents facing rare diseases in their children, she turned to experts and the Internet to demand answers.

“I said I want to know the No. 1 doctor in the world who can do something about this,” she said. Over and over, Tolar’s name came up.

“I got in contact with him and we were in contact every day,” she said. “Right away, he got very protective of Elisa.”

McCann and her husband, Dagan McCann, a travel writer, moved to Minneapolis to be close to Tolar and his treatment, she said.

Transplanting bone marrow from Stella to Elisa populated her blood with healthy cells. First, though, scientists had to give Elisa chemotherapy and radiation to make room for the new cells to “set up shop,” Tolar said. An extra boost of full-body irradiation appeared to allow the cells to engraft, or take hold, even better.

At the last measure, more than half of the donor cells from Stella had partially engrafted, a high percentage, Tolar said. In previous protocols, about a third of the children who received bone marrow transplants had some improvement, but not the dramatic results Elisa has shown. In many of the children, however, Tolar has been able to show that cells from the donated bone marrow actually gravitate to the skin, healing the injuries. 

For Elisa, the real-life results have been impressive, Gabriella McCann said.

“Before the transplant, I was walking everywhere with a needle or scalpel to open the blisters and drain them,” she said. “They would get humongous in a few minutes.”

Now, Elisa still gets blisters, but they’re smaller and they heal by themselves. She’s still fed through a tube because of the blisters that scarred her throat, but that’s getting better. And just this week, she got to go out to lunch for the first time because she’s healthy enough to be just another baby out with her mom in public.

“My daughter didn’t have a life before,” McCann said. “Now my daughter has a life and they’re pretty sure she won’t blister as much as before.”

Funding for work by Tolar’s team and other leading EB experts who are investigating stem cell therapy and gene transfer therapy at Stanford University is a huge concern. EB is classified as a rare disease, and paying for the research can be a challenge. But the scientists are boosted by organizations such as the EB Medical Research Foundation, headed by Andrea Pett-Joseph and her husband, Paul Joseph. Another prominent foundation is DEBRA of America, the Dystrophic Epidermolysis Bullosa Research Association. 

The Josephs' son, Brandon, was born 10 years ago with EB, galvanizing his parents into taking over the all-volunteer nonprofit that has raised $5 million for EB since 1991. They’ve attracted a star-studded honorary board of directors that includes actors Courteney Cox, Jennifer Aniston, Brad Pitt and Adam Sandler, plus other sports and political luminaries.

But with successes like Tolar’s bone marrow transplant and a natural gene therapy program and new research into gene transfer therapy at Stanford, the Josephs say the investment is paying off.

“A lot of families are feeling more hopeful that this is happening,” said Andrea Pett-Joseph. “It’s happening at a good pace and people can see the evidence of it. Sometimes, science is so far away.”

Source: www.today.com

By NAOMI CHOY SMITH

When Doctors Without Borders nurse Monia Sayah first arrived in Guinea in March, she couldn't have known she would witness the worst Ebola outbreak in history. Back then, there were 59 confirmed deaths from Ebola, a virus which can be fatal in up to 90 percent of cases. The death toll in West Africa has since soared to 932, the World Health Organization said Wednesday. In Guinea, where the first cases were reported in March, Ebola has killed 363 people.

"The fear is palpable," Sayah said, speaking to CBS News in New York after returning from her latest assignment. "People are very afraid because they never know if Ebola's going to hit their family or their village."

Because of the fear and stigma associated with the virus, Sayah said many infected people are choosing to hide their illness and often don't check in to treatment centers until it is too late. By that point, there is very little Sayah and her colleagues can do. They try to rehydrate the patients and administer antibiotics. But there is no proven treatment for Ebola, though an experimental drug is currently being tested.

Concerns have also been growing for the safety of medical workers in the field. A leading doctor died in Sierra Leone last week. A Nigerian nurse who treated that country's first Ebola victim died from the virus, Nigerian health officials said Wednesday, and two American medical missionaries infected with Ebola in Liberia are still battling the virus at Emory University Hospital in Atlanta.

But Sayah, who has spent a total of 11 weeks in Guinea, said she is not afraid. She and her colleagues take strict precautions to limit their risk of exposure. Before entering a high-risk zone, they suit up in head-to-toe protective clothing including gloves and goggles. "You do have to follow the rules," she said, "but accidents do happen."

She has to limit the amount of time she spends in the infected area. It's hot under the protective clothing, and exhaustion and dehydration are serious concerns. "The risk is you could faint, you could fall. You do not want to fall in a high-risk area," she said. "Maybe your goggles will move up and your eye will be infected."

Working so closely with patients at death's door has taken a personal toll. Sayah described the anguish of stepping outside a treatment facility to take a quick break from the intense heat, only to find that her patient had died in those ten minutes she was away. "It was really hard for me to know that they had died alone," she said, "not with someone holding their hands and reassuring them."

Sayah recalled the "hectic" challenges of setting up some of the first international treatment facilities for Ebola patients. By the end of May, she said, the medical community thought they had almost contained the virus. But soon after she left Guinea, another cluster of infected patients was found in another village. The virus was spreading like wildfire.

Several factors are contributing to the spread. The virus has an incubation period of up to 21 days, according to the WHO, and in West Africa the population is highly mobile, moving easily across porous cross-country borders. Traditional burial ceremonies in which relatives have direct contact with the body can also play a role in the transmission of Ebola.

Sayah found that many local communities distrust the healthcare system and foreigners. "Some have said we brought the Ebola to them," she said. "It's very difficult to contain the outbreak when communities are not cooperating." There were instances of infectious patients leaving the facility, she said, and many weren't receptive to the idea of isolation -- a crucial step in containing the virus.

During her breaks from the field, Sayah stays in touch with her colleagues on the front lines, hoping for the slightest bit of good news. Just this past week, she heard some. One of the patients who'd been under her care was discharged from hospital, apparently free of the virus.

But the situation on the ground remains dire, and Sayah hopes to see a greater response from the international community.

Despite the challenges, Sayah said she will return to West Africa to fight the outbreak. "When you're there and you see how much needs to be done," she said, "there is not a question of 'should I go back or not?'"

Source: www.cbsnews.com

By Lisa Esposito

When forensic nurse examiners work with survivors of violence – sexual assault, child abuse, elder abuse or domestic assault – they’re painstakingly collecting and documenting evidence that can hold up in a potential court case. And they’re taking care of a person who’s just been traumatized, often by someone they know well. Forensic nursing takes a balance of objectivity, skill and compassion, and it’s more than just a job for the professionals who do it.

Experts on the Stand

Whatever type of assault they’ve endured, survivors’ first encounter with law enforcement or medicine “paves the way for their entire future,” says Trisha Sheridan, a forensic nurse and clinical assistant professor at Texas A&M Health Science Center College of Nursing.

Victims face a higher risk of post-traumatic stress disorder, depression, suicide and medical problems in the aftermath, she says, and those who “have a positive experience with someone who’s trained to deal with victims of violence” tend to not only have better legal outcomes, but better quality of life than others who receive standard emergency care. But in Texas, especially the more rural areas, forensic nurse examiners are few and far between.

While certified forensic nurse examiners undergo extensive skills training, Sheridan believes graduate programs can move forensic nurses to the next level, with a deeper understanding of the science behind the evidence they’re collecting, helping them explain the pathology and ramification of victims’ injuries in a courtroom. For instance, she says that information helped the jury “make a better-informed” decision when she testified in two recent cases of strangulation.

Taking On Domestic Violence

Strangulation is one of the most frequent injuries in domestic violence, yet symptoms are subtle and often downplayed, says Heidi Marcozzi, coordinator of the Intimate Partner Violence Program, started last year as a branch of District of Columbia Forensic Nurse Examiners, which also works with victims of sexual assault.

Forensic nurses look not only for bruises and scratches, but less obvious symptoms such as petechiae (small red or purple spots on the skin), voice changes, cough and headaches, Marcozzi says. They ask patients about loss of bowel and bladder function, which is a good indicator that they lost consciousness during the attack.

“Domestic violence is a huge issue” in the nation’s capital, Marcozzi says. The program’s 30 forensic nurses respond to these calls from MedStar Washington Hospital Center, anytime day or night. Within an hour of getting the call for a domestic violence case, the forensic nurse arrives at the hospital, where ER staff have already made sure the patient is in a quiet, private space rather than the waiting room.

Before the exam, the forensic nurse walks the patient through the whole process. “We see a fair amount of drug-facilitated sexual assaults, so we want to make sure it’s very clear that the patient is able to consent,” Marcozzi says. “Then we do a medical exam head to toe to make sure they’re physically stable.” Nurses pays close attention while patients describe the incident and use that account to guide where they collect evidence, including swabs that will later go to the crime lab for analysis.

The FNE photographs any injuries and examines the patient using a high-powered light source that can reveal hard-to-see signs like bruising. The light also helps the nurse locate "foreign secretions ... things will fluoresce under certain wavelengths – semen, urine, saliva,” Marcozzi says.

More Than Just a ‘Rape Kit’

Victims of sexual assault go through essentially the same process, with the addition of a pelvic exam, which takes an additional 15 minutes or so. Examiners photograph the genitals for signs of injury, and then collect swabs as indicated. Treatment comes next. If appropriate, patients can receive Plan B emergency contraception to prevent unwanted pregnancy, or medications to protect against HIV and other prevalent sexually transmitted infections.

In sexual assault cases covered by DCFNE, an advocate with Network for Victim Recovery of DC accompanies the nurse to the hospital and helps patients with crisis management, discharge plans, crime victim’s compensation and referrals for counseling.

Preventing the Worst

For domestic violence victims, the DCFNE program teams up with Survivors and Advocates for Empowerment, a nonprofit that provides advocacy and crisis intervention, and works to hold offenders accountable. SAFE runs the lethality assessment project for the District of Columbia – trying to determine which victims are at highest risk for being killed by their abusers.

Advocates evaluate the victim’s environment for cues – such as whether the abuser has easy access to weapons, or even “if there’s a child in the home who doesn’t belong to him, which, believe it or not, increases the severity of the risk,” says Natalia Marlow-Otero, SAFE director.

Of the 5,000 or so domestic violence cases SAFE sees each year, up to 1,900 are deemed high-lethality cases. Isolation is a “huge” factor among the women – and some men – who are victims of domestic violence. Isolation and abuse are even more prevalent among immigrant clients, Marlow-Otero says, so SAFE provides an English/Spanish helpline (1-866-962-5048). People can also call the National Domestic Violence Hotline at 1-800-799-7233 (1-800-​799-SAFE). ​

Source: http://health.usnews.com

By Bill Toland

Pharmacy errors, hard-to-find clinical alerts, “farcical” training, and potentially life-threatening design flaws: Reading through the U.S. Food and Drug Administration’s catalog of electronic medical records malfunctions could be hazardous to your mental health.

If not yours, than that of the physicians and nurses who must work with the records systems, and who are reporting their experiences to the FDA’s adverse event database, otherwise known as MAUDE (the Manufacturer and User Facility Device Experience).

Most of the events submitted to the database involve misfiring medical equipment — broken aerosol compressors, faulty defibrillators — but as electronic records and computerized physician-order entry systems take hold at hospitals and clinics across the country, complaints about those systems are on the rise.  

For decades, electronic patient records systems have been heralded as a potential game-changer for the health care industry, leading to improved patient health outcomes, fewer duplicate tests and, eventually, savings for the health care industry.

While most clinicians and academics still believe the promise is there, the systems are coming under increased scrutiny from doctors, nurses and some on Capitol Hill who say the technology is poorly regulated, often unproven and occasionally unreliable. 

As such, the health records systems haven’t yet lived up the promise that was made when the Obama administration won passage its 2009 stimulus bill, which included $25.8 billion for health IT investments and incentive payments.

“Like with any new technology, there’s going to be unintended consequences,” said William M. Marella, director of Patient Safety Reporting Programs for the suburban Philadelphia Emergency Care Research Institute. He’s also director of the state’s Patient Safety Reporting System, which tracks adverse events and near-misses in Pennsylvania.

“In the long run, [electronic health records] will make us safer than we were” using paper records, Mr. Marella said. “But in the short term, we’ve got a lot of [implementation] issues that need to be addressed before [electronic health records] meet their promise.” 

Last month, the nation’s largest union of registered nurses sent a letter to the FDA asking for broader and more stringent oversight of electronic records systems and of computerized physician-order entry systems, which allow clinicians to log treatment instructions for patients.

The National Nurses United, as part of its broader campaign highlighting the potential dangers of “unproven medical technology,” says FDA officials should test electronic medical records as rigorously as they might a new drug or an artificial hip implant.

“I don’t think that opinion is an outlier opinion,” Mr. Marella said. “Lots of clinicians are unhappy with the way these systems work, and are unhappy with the documentation burden we put on them.”

The nurses union also wants the U.S. Centers for Medicare and Medicaid Services to suspend its “meaningful use” program, which requires providers to start installing electronic medical records systems at the risk losing Medicare funding, “unless and until we have unbiased, robust research showing that [electronic health records] can and do, in fact, improve patient health and save lives.”

To date, since 2011, that CMS program has issued nearly $24 billion to hospitals and physicians clinics seeking to upgrade their electronic records systems and make the transition away from paper records.

Tracking the errors

The letter submitted by the nurses union to the FDA was part of the commentary related to the federal government’s proposed overhaul of its framework for regulating health IT. That draft proposal was published in April, a joint effort of the FDA, the U.S. Department of Health and Human Services, the Federal Communications Commission and the Office of the National Coordinator for Health IT.

Others offered their own responses. The College of Healthcare Information Management Executives and the Association of Medical Directors of Information Systems, in joint comments to the FDA, said that the government needs a retooled electronic health records certification program in order to “identify clear standards and require strict adherence to those standards.”

The report itself noted that “a nationwide health information technology infrastructure can offer tremendous benefits to the American public, including the prevention of medical errors, improved efficiency and health care quality, [and] reduced costs. … However, if health IT is not designed, developed, implemented, maintained, or used properly, it can pose risks to patients.” 

Patient risk was a concern when, last summer, UnitedHealth Group Inc. recalled software that was used in hospital emergency rooms in more than 20 states “because of an error that caused doctor’s notes about patient prescriptions to drop out of their files,” according to Bloomberg News. There were no reports of patient harm, a UnitedHealth spokesman said, but the glitch illustrates the potential pitfalls for digital health records.

The MAUDE system, which accepts voluntary and anonymous incident reports from practitioners, and Mr. Marella’s own reporting have turned up plenty of other glitches. Some involve human error, others involve software and interoperability malfunctions, and many are simply design flaws, such as this example from a 2012 Pennsylvania Patient Safety Authority report:

Patient with documented allergy to penicillin received ampicillin and went into shock, possibly due to anaphylaxis. Allergy written on some order sheets [but] never linked to pharmacy drug dictionary.

And this one, from MAUDE: 

Potassium chloride was prescribed twice per day as treatment for hypokalemia. The lab testing revealed a [bad] jump in the potassium level, but the result came to the EHR without alert or warning, and the nurses continued to give the patient potassium anyway [because] the nurse did not know that the potassium level was high. ... Though this patient did not die, others have from this type of defect.

Or this one, from 2013: 

Patient’s medication list and other active orders did not appear on the doctor’s order section on the CPOE system, rendering it impossible for the doctor to confirm, alter, and reconcile the medication list. ... For obvious reasons, this defect in the CPOE is potentially life threatening when the doctor(s) do not have access to the current medication list.

And from April: 

A patient [was] at risk for respiratory arrest due to a narrowing in the trachea. There is no place on the EHR to list such a life-threatening condition that would be visible to each and every care team member who opened the EHR for this patient. ...  Care was delayed due to the above mentioned reasons, [and] the patient sustained a complete respiratory arrest that led to a cardiac arrest and anoxic brain injury.

Human factors 

While examples of electronic health records problems can be retrieved via various state and federal databases, many in the medical field say tracking the issues in a more comprehensive way will lead to better systems. Mandatory reporting would help, too, since only a fraction of adverse events related to electronic health records are actually reported to the FDA or state authorities. 

But health IT vendors are against mandatory reporting, or any other system that would run afoul of the confidentiality clauses that are built into contracts with hospitals and clinics. Public, mandatory confessions of errors might also discourage such reporting, since the clinician who admits the error could be punished by his or her employer. 

“We have felt that reporting by both providers and vendors should be voluntary. That is most consistent with the notion of a learning environment,” said Mark Segal, the chairman of the Electronic Health Records Association, told The Boston Globe.

Clinicians, too, are also wary about striking the right balance. “FDA oversight and regulation could slow innovation,” particularly if electronic health records and related systems are indeed scrutinized like other medical devices, according to a letter to the FDA from American Medical Association CEO James Madara. 

And they have the FDA on their side. The agency does not intend to require the reporting of electronic health records-related adverse events, and does not intend to vet electronic health records in the same way that it reviews drugs and other medical devices.

But when push comes to shove, though, regulators should err on the side of safety, said Dean Kross, a cardiologist in private practice at the Allegheny Health Network and a longtime critic of electronic health record companies and the side effects of health IT adoption. 

“The vendors have not been held accountable for the devices they are manufacturing,” he said. There is negligible pre-installation vetting, or post-market surveillance, for “safety, usability and efficacy,” he said.

And regulators should keep a watchful eye on human usability.

“Ninety percent of [complaints] have got something to do with faulty user-device interaction,” said Robert A. North, chief scientist at Human Centered Strategies, a Colorado company that studies and seeks to reduce risk and error in medical device design. “It’s not that something that is breaking or freezing. ... it’s nothing to do with the electronic circuit board. It’s the human circuit board.”

While Mr. Marella is aware of the design shortcomings of electronic health records, he’s still a believer that the systems can, and are, improving patient and population health.

He points to the example of a Pennsylvania hospital that noticed some its patients were overdosing on narcotic painkillers while in the hospital, and had to be given reversal agents to mitigate the overdose symptoms. When clinicians dug into the electronic records, they saw that the overdoses were happening primarily among people being given painkillers for the first time.

“So they decided that the default dose was actually too high” for first-time opioid recipients, and adjusted the first-time dosage going forward, Mr. Marella said. Identifying a hospital-wide problem, and addressing it quickly, probably couldn’t have happened without electronic health records.

“We really have to do a lot more work in what we call human factors,” so that the systems are intuitive, he said. “We’re quite a long ways from there.”

Source: www.nationalnursesunited.org