Saturday, September 26, 2015

Patient Reported Outcomes Measurement Information System (PROMIS), funded by the National Institutes of Health (NIH)

PROMIS® stands for Patient Reported Outcomes Measurement Information System, which is a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being. PROMIS® tools measure what patients are able to do and how they feel by asking questions. PROMIS measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment, and PROMIS® tools can be used across a wide variety of chronic diseases and conditions and in the general population.

The data collected in PROMIS® provide clinicians and researchers with important patient–reported information about the effect of therapy that cannot be found in traditional clinical measures. When used with traditional clinical measures of health, PROMIS® tools allow clinicians to better understand how various treatments might affect what patients are able to do and the symptoms they experience. Not only can the reports be used to design treatment plans, but also can be used by patients and physicians to improve communication and manage chronic disease.

The uniqueness of PROMIS® lies in four key areas:

  1. Comparability—measures have been standardized so there are common domains and metrics across conditions, allowing for comparisons across domains and diseases.
  2. Reliability and Validity—all metrics for each domain have been rigorously reviewed and tested
  3. Flexibility—PROMIS can be administered in a variety of ways, in different forms
  4. Inclusiveness—PROMIS encompasses all people, regardless of literacy, language, physical function or life course. 

Read about the 11 research areas--identified by the PROMIS Steering Committee--intended to generate interest in advancing the science of PROMIS among diverse researchers.

Blood seeping from the walls, killer doctors: ICU hallucinations haunt a staggering number of patients | National Post

The doctors were standing in the corner of Cheryl Misak's room, wearing little Christmas party hats and getting more and more drunk. Then, they stripped naked and paraded the patients around the intensive care unit one by one, taunting and humiliating them to their giddy delight.

The delusion felt completely and utterly real, one of many that became seared into Misak's mind after she nearly died in a Toronto ICU from acute respiratory syndrome and sepsis caused by a devastating infection.

In 1998, the philosopher and former University of Toronto provost survived serious multiple organ failure. But she also experienced terrifying moments of "utter insanity" in the ICU. She left hospital so frail and emaciated she refused to have her picture taken.

With the slightest exertion, searing nerve pain shot up her body like fire, from the soles of her feet to her neck. She couldn't sleep; the sounds of the ICU stayed with her for a year — the whoosh and beep of the ventilator, the patients moaning in pain or anguish in the beds next to her. She would break into a cold sweat at the sound of an ambulance siren.

Misak experienced forms of a terrifying phenomenon researchers have only begun to fully grasp.

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Friday, September 25, 2015

Houston Methodist doctors strive to shine in star ratings - Houston Chronicle

Taking consumer-driven health care to a new level, some patients in Houston can now rate their doctor like they would a trendy new restaurant or used car.

Think stars - one to five.

Earlier this month Houston Methodist became one of a handful of hospitals in the country to post on its website the number of stars given by patients to 66 of its primary-care and orthopedic physicians. The more stars, the better the perceived performance.

"We live in a Yelp culture. Everyone rates everything. Medicine has just come along for the ride," says Dr. Joshua Septimus, an internist who is part of the new program. "I think the culture has changed. When I first got into medicine 12 years ago I don't think patients thought of their doctors as being five stars or four stars. They were just their doctors."

As times change so, too, does the reality of medicine.

The Houston Methodist pilot program is seen as yet another step in the larger shift away from the doctor-knows-best model of the past. A stated goal of the Affordable Care Act is more transparency, which means giving patients a stronger voice in their own care. That, in turn, means providers must now compete in the arena of consumer choice.

"I think this is a real opportunity for consumers," says Dr. Robert Phillips, executive vice president and chief medical officer at Houston Methodist. "A more engaged patient is a patient who is able to achieve better health."

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Atul Gawande’s ‘Being Mortal’ - The New York Times

It began with a tingle in the surgeon's fingers and a pain in his neck. A couple of years later, he learned he had a tumor inside his spinal cord. That was when the difficult choices began. Should he have it removed right away in a risky operation, as his doctor recommended? Or should he take time to consider this question: At what point would the expanding tumor cause debility bad enough to justify the risk of greater debility or even death in trying to fight it?

The surgeon in the story is the father of Atul Gawande, who is also a surgeon as well as a writer for The New Yorker. His new book, "Being Mortal," is a personal meditation on how we can better live with age-related frailty, serious illness and approaching death.

It is also a call for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is "to enable well-being."

If that sounds vague, Gawande has plenty of engaging and nuanced stories to leave the reader with a good sense of what he means. In a society that values independence, what happens when that is no longer possible? We need to reckon with the reality of the body's eventual decline, he argues, think about what matters most to us, and adapt our society and medical profession to help people achieve that.

Gawande writes: "For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed — victims of our refusal to accept the inexorability of our life cycle?"

Medical professionals are the ones who are largely in control of how we spend our "waning days," he writes, yet they are focused on disease, not on living. "Medicine has been slow to confront the very ­changes that it has been responsible for — or to apply the knowledge we have about how to make old age better." The experts quoted here argue that doctors should not only treat disease but also concern themselves with people's functional abilities, and that most medical trainees should learn about geriatrics.

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Wednesday, September 23, 2015

The Pitfalls of Health-Care Companies’ Addiction to Big Data - Bloomberg Business

The clinician called a prospective customer who was applying for health insurance to pose a very direct question: Why had she left the names of several medications she was taking off the application she submitted to Aetna? The clinician rattled off the names of the drugs, the dates they were prescribed, and the doctors who had prescribed them.

The woman insisted the information was wrong. She recounted the story to her mom, looking for advice. The mother was shocked and embarrassed. Those prescriptions were hers, designed to treat medical conditions she'd been hiding from her daughter. The secret was out, and the women were forced into an emotional conversation about the mother's ongoing struggles with her health.

The mother eventually filed a complaint with the U.S. Department of Health and Human Services, alleging that Aetna had violated her privacy. A government investigation uncovered the cause of the error: The women's medical records had been mixed up in a database maintained by a supplier to the second-largest U.S. health insurance company. Bloomberg obtained a copy of the HHS investigation, along with nearly a dozen other cases, through a public information request. The details offer a rare look at how the health-care industry's growing reliance on data mining can go awry.

Aetna blamed the mistake on Milliman, a data supplier. In its explanation to the government, Aetna said Milliman described the inaccurate linking of medications as a "very infrequent occurrence" that sometimes happens when pharmacies make mistakes in coding. Jeremy Engdahl-Johnson, a spokesman for Milliman, declined to comment, citing "a longstanding policy not to comment on our work for clients."

Aetna says it no longer uses Milliman's IntelliScript data service or other prescription information for determining an individual's eligibility for insurance, a practice phased out across the health insurance industry as part of President Barack Obama's health-care overhaul. Aetna says the company does use prescription databases for setting group rates and assessing risk.

Government documents show that Aetna hired RSA Medical to call patients about discrepancies between IntelliScript results and what patients had disclosed in their applications. The RSA Medical representative who called the daughter did not know or disclose that the medications belonged to the applicant's mother. RSA Medical says it complies with all privacy laws.

Aetna told HHS that the mother and daughter figured out the link on their own. For this reason, the HHS investigation concluded that no privacy rule was broken. In addition, Aetna and Milliman had a business associate agreement that allowed them to share data on applicants, HHS said. HHS's Office for Civil Rights closed the Aetna case without finding any wrongdoing.

Medical data is legally shared with more third parties than many Americans realize, said Ifeoma Ajunwa, an assistant professor of law at the University of the District of Columbia. Sensitive information about a patient's prescriptions and conditions can bounce from one company to the next as part of routine billing or administrative processes. "A major concern with prescription databases is that they provide ample opportunities for invasions of privacy," Ajunwa said. They are also prone to mistakes.

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Giving Birth in Different Worlds - The New Yorker

The photographs in the series "Hundred Times the Difference," by the photographer Moa Karlberg, capture, in closeup, the faces of women in the final stages of giving birth. Across the images, there is a range of expressions: grit and sensuality, trepidation and expectation, pain and elation. But in their intimate perspective the photographs emphasize the women's shared experience—the inward focus and physical determination in their final, transformative moments of becoming mothers.

If you look closely, though, you'll see signs—the sterile white backgrounds in some photos and patterned fabric in others; a single acupuncture pin in the center of a forehead—that the women in Karlberg's photographs are having drastically different experiences of giving birth. Half of the pictures were taken in Sweden and half in Tanzania. In the former country, almost all births take place in hospitals, where women have access to supportive midwives who are backed by sophisticated medical technology when needed. In Tanzania, by contrast, only half of births take place in medical facilities, and those that do often occur in places that lack even the most basic amenities.

In a statement about the project, Karlberg, a native of Sweden who travelled to Tanzania in June, with support from the International Women's Media Foundation, describes the disparity between the scenes she witnessed in the two places. In her home country, "The woman about to give birth is lying on the public hospital's white sheets. . . . Next to her is her husband, stroking her back, talking to her supportively, helping her to focus on her breathing. Low music comes from the speakers. Water and juice is on the table next to the height-adjustable bed. The woman has her own room and her own bathroom with a tub. Painkillers are available upon request." In Tanzania, "the woman about to give birth is lying on a bare, rusty bunk, covered in fabrics she brought with her. The water tap is not working, and even if it was, the water would not be drinkable. If she has to urinate there is a bucket on the floor. There is no family member by her side, but three other women, on similar bunks and in various stages of labor, share the room. As they moan, the nurses tell them to be quiet. Since there are no painkillers, the women need to save their strength for the pushing in the end." As a result of these extreme disparities, and the corresponding difference in the ability to deal with medical complications, the risk of dying during childbirth in Tanzania is a hundred times higher than it is in Sweden.

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A hydra-headed scourge | The Economist

Even street-savvy former gang members are shocked by the spread of heroin to Chicago's suburbs. Earlier this year, when Roberto Hernández, a Puerto Rican, was in the final stages of preparation of a big push by Gangs to Grace, a church ministry on the west side, to save Latino gang members from lives of violent crime, he explained that white girls from the suburbs go to neighbourhoods even he wouldn't set foot in to buy heroin. Many of them are as young as 14 or 15. Some prostitute themselves to fund their addiction.

"We have the worst heroin problem in the nation in the Chicago area," says David Cohen, a recovering heroin addict who counsels addicts at Insight Behavioural Health, a treatment centre. Greater Chicago has the highest number of emergency-room visits related to heroin in the country with 24,627 visits in 2011 (the latest year for which records exist), compared with 12,015 in New York. In Chicago 35% of substance-abuse treatment admissions are for heroin, compared with 16% nationwide. And demand, especially from young women, keeps rising: on the city's west side business is booming at what insiders say is the largest open-air drug market in the country.

Heroin hit the Midwest harder than other places because the coasts learned to deal with the problem in the 1960s, and are thus better able to handle its resurgence, says David Ferguson, a medicinal chemist at the University of Minnesota (see chart). Midwesterners, especially in rural areas, are less aware of the dangers. They had to learn how to fight drug traffickers, mostly from Mexico, who use Chicago as a transport hub for their wares. The Midwest and the South also have far fewer treatment centres for addicts than the north-east.

The heroin epidemic in the Midwest is closely linked to the rampant opiate epidemic. As doctors prescribed opioid painkillers such as OxyContin more and more liberally, their abuse grew. Sales of prescription opioid painkillers have increased 300% since 1999, according to the federal Centres for Disease Control and Prevention (CDC), even though the amount of pain Americans report to their physicians has not changed.

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Tuesday, September 22, 2015

NYTimes: Depressed? There's an App for That

Thousands of new mobile phone apps have popped up to treat symptoms of depression and anxiety. Though many claim to employ clinically sound methods, critics say that human interaction is key to mental health care.

Is it safe or effective to use apps to treat anxiety or depression?

NYTimes: ‘Dear Parent, Your Child Has Had a Psychotic Break’

I sit in my small office at the university counseling center, sighing as I pick up the phone to make the call that I always dread. I have worked as a psychiatrist with college students for 20 years, and this part never gets easier. One, two, three rings, and the mother of a student who had been in my office minutes earlier answers the phone.

I introduce myself and then deliver the news: "I've had to hospitalize your son, Jacob."

"What are you talking about?" she says. "There's nothing wrong with my son."

I explain that his roommates brought him in earlier that day. They told me that he hadn't slept in a week and had barely had anything to eat or drink.

"I know," she says. "They called me. But he's just adjusting to school. He arrived a month ago. He's a freshman, for God's sake."

I concede that freshmen can have a tough time adjusting, but emphasize that Jacob is having a psychotic episode. He was afraid to leave my office, I tell her, because he felt he was being followed on campus. He said he had not been able to get any work done because he was confused and distracted by voices in his head. The hospital, I explain, is the safest place for him right now.

"My son was an all-A student in high school," she maintains. "He won debate competitions."
I understand her denial. I have college-age children. If one of them became psychotic, I would be in shock. And I would be angry with the messenger.

"So why couldn't you wait until I got there to see what was going on?" she asks. "I could get a flight in a few days and meet with you and my son."

Jacob's mother lives a thousand miles away. There is no father in the picture.

I agree that it would have been better if she and Jacob and I could have met in my office together. But I reiterate that it wouldn't have been safe to wait until she got here. Jacob was so confused and scared that I wasn't sure he could have made it back to his dorm.

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NYTimes: An Aging Population, Without the Doctors to Match

We talk a lot these days about what constitutes a good way to die. There's also much discussion about the art of healthy aging.

But largely absent from the conversation are all the people between the two. People who aren't dying but who grow more frail. People who have significant health concerns. People who suddenly find themselves in need of care.

People who are, by and large, miserable.

We have a name for this part of life in our family. We call it "the land of pink bibs."

In his 70s, my father, a highly respected orthopedic surgeon, developed Alzheimer's. Later in the course of the disease, he broke his hip. One day when we visited him at the nursing center, about six months after his accident, we found him sitting in a row of patients all wearing pink bibs, left on after they had finished eating. Like the others, his head was bent toward his lap; though his eyes were open, they were not focused on anything. His shoulders slouched, like a rag doll's, and his mouth hung slightly ajar.

We were not prepared to see him like this.

"Oh, not a stroke," the nurse said. "He is fine. He's just on a new drug — a mood stabilizer. He was becoming violent to the aides. Patients often get like this when they have Alzheimer's."

We were suddenly confronted with decisions about his care that we didn't understand. Many families face similar questions: Do we move Mom out of her house to assisted living? Dad is so forgetful and argumentative, does he have dementia? Do our parents have enough money to hire a caregiver — and do we? When should we move them to a nursing home? What kind of care will they need when they get there?

These are difficult questions. Yet when you look around for help, you find there isn't much to be had.

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NYTimes: Trapped in the System: A Sick Doctor’s Story

We spend a lot of time talking about various metrics of quality or access in the American health care system. The problem with many of them is that they rarely seem to capture the issues that people face in dealing with care. Although many metrics are improving, problems remain that still seem insurmountable.

It's true that the number of people with no insurance has gone down significantly since the Affordable Care Act was passed. But that's only one measure of access. In many other ways, access is still surprisingly bad. I rarely use anecdotes to make my point, but in this column I'll make an exception.

I have ulcerative colitis, and have had it for many years. When it was poorly controlled, I lived in constant fear of not being near a bathroom. The half-hour commute to my job often necessitated a stop on the way to work because I feared I would lose control of my bowels. My wife could tell you many stories about how I made innovative use of my babies' diapers in cases of emergencies.

But a number of years ago, after I found that drug after drug didn't work, my gastroenterologist suggested an older immunosuppressant. I'm a doctor, and I recognized it as a drug often used to treat cancer. It carried with it some significant side effects, most notably a small chance of myelosuppression, in which your bone marrow shuts down and produces too few blood cells.

That horrified my wife. But she didn't appreciate that this was, to me, a small price to pay for the opportunity to not be constantly worried about my proximity to a toilet. I weighed the benefits versus the harms. I decided to give it a go.

The medicine changed my life. I have few, if any, symptoms anymore. It's gotten to where I can now feel annoyance when my children need to go the bathroom when we're out. By my last colonoscopy, my ulcerative colitis had gone into remission. I feel as if I have the bowels of a normal person, for which I am utterly grateful.

The medicine is old and it's generic. It costs about $80 for three months even though I haven't met my deductible. But this story isn't about money. This is about the nightmare of how hard it is for me to get the drug.

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Monday, September 21, 2015

Harvard Medical School revamps curriculum - The Boston Globe

Harvard Medical School has debuted a major set of changes to its curriculum that the school says will cater to a generation of technologically savvy students and will better prepare them for an ever-changing health care environment.

The changes, which began for first-year students this academic year, don't alter the content of the classes so much as their order, and they transform how professors use time with students in the classroom.

Students for the first time will complete clinical rotations in a hospital earlier, in the second rather than third year of medical school. The school is also changing its pedagogical style.

Gone are the days when a professor stood at the front of a cavernous classroom, ticking through slides as students robotically annotated PowerPoint printouts. Students are now expected to memorize facts on their own time and come to class ready to think on their feet and work in groups, rather than listen to a lecture.

Harvard's updated curriculum is designed for the smartphone generation of students, who take for granted the ability to find information quickly and are less apt to read dense textbooks, professors say.

"My job, in the time that we're together, student and teacher, is to teach you what you can't Google," said Richard M. Schwartzstein, a Harvard professor who helped develop the new curriculum.

The steps are similar to those taken by several other top medical schools, including Vanderbilt University, the University of Oregon, and New York University, and are underway at many others, including Georgetown and Drexel universities.

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Sunday, September 20, 2015

Mobile apps changing the doctor-patient relationship? | Star Tribune

In case you missed it this month, Apple's "Special Event" devoted significant attention to health care innovation. It even brought onstage a doctor associated with a new app that lets clinicians view patients' appointment schedules and see vital signs, such as heart rates, via the Apple Watch.

This new AirStrip app has plenty of company. A search of the term "mobile health" in the Apple App Store produces 22,755 programs that purport to do everything from consolidating personal health records to triaging symptoms. One app can even turn a smartphone into a medical device designed to diagnose patients with sleep apnea when a single-lead electrocardiograph (ECG) is connected to the phone. 

Most apps are intended for use by consumers. But there are also those intended for clinical use by health care providers, assisting with assessment and decisionmaking. Increasingly, they offer real-time care monitoring, allowing users to share health data with a doctor from a smartphone. Some apps even allow doctors to virtually assess, diagnose and treat patients without ever having them leave home.

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NYC plan trains lay people as mental health screeners -

 — The training session asked workers how they would respond to troubled people — a drug user, an abuse victim or someone with bipolar disorder — that they might encounter on the job.

They weren't doctors or therapists, and their employer, a wide-ranging youth outreach organization called The Door, isn't only a counseling center. But mental health how-tos are part of everyone's training, whether they're career advisers or basketball coaches, and reaching out to offer help is part of everyone's job.

New York City is about to put that idea to a major test: a $30 million plan to provide mental health training to staffers at social service organizations. They'll be prepared to screen people for possible psychological problems, provide information and try to motivate them to make changes in their lives.

"Everyone can be a healer," city first lady and mental health advocate-in-chief Chirlane McCray said in a statement.

It's an increasingly popular approach to extending the thinly stretched mental health system, fostering awareness and reaching people who don't seek out professionals. But there also has been some debate over what role nonprofessionals should play.

The concept dates to the 1960s but has taken new hold recently in places from Philadelphia, which trained 10,000 workers and residents in "mental health first aid" and is aiming for 150,000, to Goa, India, where a 2,700-patient experiment found some benefits to including lay counselors in psychological care.

The World Health Organization has called nonprofessionals "a valuable resource for mental health care." The White House led a push that is directing $15 million a year to train teachers in mental health first aid, which 450,000 people nationwide have taken since 2008. About 1,000 people have gone through a separate program called "emotional CPR."

Part of the rationale is sheer numbers: More than 43 million American adults had some diagnosable mental illness in 2013, according to a federal estimate. Meanwhile, over 97 million Americans live in areas, some in New York City, that the government says have too few mental health professionals.

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