But soon after Hudak, 28 at the time, got the Essure implants in 2000, she said she developed health problems, including severe pelvic and lower back pain, difficult menstrual periods and pain during intercourse.

She complained to researchers at the Cleveland Clinic and was told her problems were not related to the implant. In an affidavit to the Food and Drug Administration, Hudak alleges that answers she gave researchers in response to questions about pain, adverse health effects and even whether her period was late had been altered on her medical record, without her knowledge. Those statements were part of the usual data collection for FDA approval of the device.

“I realized something could go wrong in a clinical trial, but I thought they would take care of me, and that if something wasn’t right, they’d fix it,” said Hudak, who eventually had a hysterectomy to remove the implants in 2013 and has filed a claim against Essure’s manufacturer for compensation for her injuries.

Hudak is one of several clinical trial participants who say that when they experienced complications with the implant, doctors and nurses ignored or belittled their symptoms, insisted they could not possibly have been caused by Essure, and referred them elsewhere for treatment.

On Thursday, a FDA advisory committee will hold Ìýin Silver Spring, Md., to address questions about the safety and effectiveness of Essure, which was approvedÌýin 2002. Some women’s health care advocates want the device pulled off the market, and Ìýfiled with the FDA by a Florida law firm says that the approval process and clinical trials were “replete with fraud.”

Users have filed with the FDA citing chronic pelvic pain, debilitating periods, pregnancies that occurred with Essure including five that ended in fetal death, hysterectomies to remove devices that moved to other organs or broke apart, and four patient deaths, including one by suicide.

Officials with Bayer HealthCare Pharmaceuticals, which purchased Essure in 2013 for $1.1 billion from the company that developed it, Conceptus Inc., said they have full confidence in the device and are not concerned about alterations in medical records.

“It seems like the proper clinical practice procedures were followed,” said Dr. Edio Zampaglione, Bayer’s vice president for United States medical affairs and women’s affairsÌýwho has not seen all the clinical trial records. “If a mistake was identified, it was crossed out, initialed and dated. … There was full transparency.”

Officials at the Cleveland Clinic echoed that statement. The investigator, Dr. Linda Bradley, refused requests for an interview, but a clinic spokeswoman said that “it is common practice” to update documentation over the course of a clinical trial “to reflect all possibilities related to medical events.”

The FDA noted in its briefing materials for Thursday’s hearing it was aware of the allegations from women that records had been altered but said its monitoring of the study showed no evidence of that.

But a in the New England Journal of Medicine on Wednesday offered harsh criticism of the clinical trials on the implant. “Though Essure offers possible advantages to women seeking sterilization, the evidence suggests that it is neither as effective nor as safe as the pre-marketing approval evaluation indicated,” Drs. Sanket S. Dhruva, Joseph S. Ross and Aileen M. Gariepy wrote.

The physicians criticized the lack of a comparison group and the rush to approve the permanent implant after only a year of followup for most clinical trial participants. They also noted concerns “about incomplete followup and biased results” in longer-term studies, and they suggested the fact that nearly one-third of the trial participants did not complete the trial meant that “adverse events including unintended pregnancies were probably missed.”

Changes In The Charts

The Essure implants consist of small coils, made of a nickel alloy and a polyester-like fiber that are placed in the Fallopian tubes, where they trigger inflammation that causes scar tissue to form, blocking the tubes and preventing conception.

Bayer refuses to say how many devices have been used in the United States,Ìýbut says over one million units have been sold worldwide and 750,000 women use them.

Hudak, the mother of one son, joined an early Essure trial. She said that researchers did not think the symptoms she developed were related to the device. She said she was surprised, however, to find in her records that the answers she gave in response to questions about pain, adverse health effects and even whether her period was late had been altered, with no changed to yes and vice versa. Some answers had been crossed out completely. All of the changes were initialed and dated, according to the copies she provided to a reporter.

In those records, Bradley wrote on her chart on Jan. 28, 2002, that the cause of the back pain, which was worse before her menstrual period, was unknown but “does not appear to be gynecologic.”

Later that year, on Nov. 14, Hudak called to report she had been bleeding after intercourse for the past two months, and the clinic note says Bradley referred Hudak to “her regular gyn.”

Hudak said that over the years, she started to suffer from migraines, rashes, joint pain and fatigue. But she said that after she got the implants removed, “that pain I had in my back all those years, every single day, went away.”

Kimberly Lira Huddleston says she found her records also did not reflect her answers to researchers at Women’s Health Research in Phoenix. After getting the implants in 2000, she says she was in constant pain. She complained to the clinical investigators for three years, she said, finally showing up at the research center and demanding they remove the implants. The researchers ordered her to leave the premises, she recalled.

“They had no concern for me,” said Huddleston, now 39, who still has chronic pelvic pain. “Once I wanted the implants out, I was of no use to them.”

When Huddleston, who has not filed a lawsuit or statements with the FDA, obtained her records from the study recently, she said she found a document signed by the principal investigator stating that she had no problems with Essure but had withdrawn from the trial and couldn’t be found, despite numerous attempts to reach her.

The clinical trial record she provided to a reporter shows the word “severe” crossed out from her report of “severe menstrual cramping.” The word “ongoing” was crossed out from a response about abdominal cramping. The changes were initialed and dated by researchers.

Officials at the Phoenix center did not respond to repeated phone calls. The founder of the center, the late Dr. Jay M. Cooper, is one of the chief authors of research papers on Essure. He in those publications that he owned equity stock in the company.

Patricia Reese Rhodes was also a participant in the trial at the Phoenix center. Born in 1976, she discovered that her medical record listed her birth year as 1956, as she points out in an affidavit to the FDA, making it appear she was in her mid-40s rather than in her mid-20s when she was sterilized.

While clinical trials generally prefer young healthy participants who are less likely to develop complications, the FDA required that women as old as 44 be represented in the Essure trial.

Side Effects Dismissed

Several other clinical trial participants who developed serious health complications said they were also told the problems were not related to the device.

But that raises concerns among some experts such as Dr. Diana Zuckerman, president of the National Center for Health Research, a nonprofit consumer think tank and research group based in Washington, D.C. “The whole point of a trial is to capture things you wouldn’t know would happen. It doesn’t matter if you think the symptoms are related or not. They should be counted,” she said.

A clinical trial participant at the Greenville, S.C., trial site said she was dropped from the study after complaining of acute pain. Crystal Johnson Brown, now 39, said investigators told her the pain came from , an infection of the female reproductive organs, and since it was a sexually transmitted disease, she should seek treatment elsewhere.

“After that, they never called me no more,” she said in a recent interview. “I never heard from them again.”

Brown said she still has severe debilitating lower back and pelvic pain and often seeks help at emergency rooms because she has no insurance. But Zuckerman says that her infection, like all health problems, should have been recorded in the trial data.

Gabriella Avina, a study participant at a San Ramon, Calif., trial site, was so enthusiastic about Essure that she became a paid spokeswoman for Conceptus for several years, answering questions women wrote in to “Ask Gaby.”

Avina was in her mid-30s when she had Essure implanted in 2000. Just a few months after getting the implant, Avina developed a thyroid disease, which is not uncommon among women.Ìý Then, in 2002, she started bruising and was diagnosed with the blood platelet disorder thrombocytopenia, and in 2004, she was diagnosed with celiac disease. In 2009, she started falling and was diagnosed with myasthenia gravis, and in 2011, she was diagnosed with Sjogren’s Syndrome, which causes dry eyes and dry mouth.

All five of the diseases are auto-immune diseases. Avina, a nurse who will be testifying at the FDA hearing, said that even though there is no evidence the conditions were triggered by an immune response to the implant, they should have been recorded in the clinical data. She said researchers were unable to locate her records when she sought to get them, but she does not believe they noted the other problems she was encountering.ÌýÌýShe has always been unable to wear cheap jewelry that contains nickel, andÌýthinks her problems may have been related to a possible response to the nickel in the device.

“The interesting thing is that because I worked in the clinical research center, they knew I was sick,” said Avina, who had a hysterectomy to remove the implants last year. Her health conditions have not resolved.

No Comparison Group

One of the problems with clinical trials of medical devices is that there is rarely a control group of similar women for comparison, which is standard in clinical trials of drugs, where a comparison group receives a placebo, said Dr.ÌýWilliam Maisel, theÌýchief scientist and deputy center director for science at the FDA’s Center for Devices and Radiological Health.

“These studies did not have a comparison group of women who did not get the Essure device, so the ability to conclude the relative rates of symptoms in Essure patients compared to other patients can’t be correctly done through these studies,” Maisel said.

Maisel said the FDA believes the benefits of Essure still outweigh the risks, and that all birth control choices have risks as well as benefits.

But to Zuckerman, telling a patient that the pain in the pelvis is definitely not related to the device is not defensible. “If you put something in the pelvic area, it’s ridiculous to assume that pelvic pain has nothing to do with it,” she said.

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Her decline was precipitous. She fell repeatedly. She stopped driving and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldn’t even stand in the shallow end of the pool. “I feel like I’m drowning,” she’d say.

A retired psychiatrist, my mother had numerous advantages — education, resources and insurance — but still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of their own specialty. Surgeons recommended surgery. Neurologists screened for common incurable conditions.

The answer was under their noses, in my mother’s hunches and her family history. But it took a long time before someone connected the dots. My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.

“This should be one of the first things physicians look for in an older person,” my mother said recently. “You can actually do something about it.”

‘Did Mom Tell You? She Fell Again.’

The falls started in 2004. My mother fell in the bedroom of her Bethesda home. She fell in the airport while returning from a trip to see my sister. Sometimes she told me, and sometimes a sibling would call or e-mail. “Did Mom tell you? She fell again.”

Millions of older adults fall every year, but it was my mother’s uneven gait that tripped her up. She was unsteady on her feet; the slightest incline threw her off stride. Sometimes she quickened her pace involuntarily. Sometimes she bent over before straightening back up.

She went to doctor after doctor. “I want a diagnosis,” she would say before the next appointment with a neurologist, geriatrician, urologist or orthopedist. “I’m convinced this is something organic — that it has an underlying biological cause.”

A series of neurological evaluations ruled out the obvious suspects: My mother didn’t have the tremor typical of Parkinson’s, a devastating, progressive disorder, and she did well on cognitive tests, so it wasn’t Alzheimer’s disease.

Next, my mother went to see an orthopedic surgeon. He said she had stenosis, or a narrowing of the open spaces of the spine, and recommended surgery. She underwent a complicated, potentially dangerous back operation, and she seemed to be walking more smoothly afterward — for a few months.

As time went by, though, she developed other symptoms. Perhaps because she wasn’t exercising, her blood pressure went up. She gained weight and was at risk for diabetes. She developed a persistent hacking cough, but no one could identify the cause since her lungs were clear.

She was also having trouble getting to the bathroom on time, so she had more surgery, this time to implant mesh designed to alleviate urinary incontinence. Medicare and private insurance picked up the tab, but once again the relief was temporary.

The bad news was that it had taken so long to get the diagnosis that some of the damage may be irreversible.

My mother had always been terrified she would lose her memory. Her mother, Helen, who died in 1988, had spent the last five years of her life bedridden, unable to walk and oblivious to her surroundings. Any physician who took a careful family history would know that my mother suspected Helen’s dementia was caused by normal pressure hydrocephalus, or NPH, a buildup of cerebrospinal fluid in the brain that causes difficulty walking, urinary incontinence and cognitive loss, in that order.

When my mother met with specialists, she floated the idea that she might have NPH. In some ways, she hoped that was the diagnosis, because it often can be treated by implanting a small shunt into the brain to drain off the excess fluid.

Around this time, another neurological evaluation that included MRI scans of the brain revealed that my mother had enlarged ventricles. Ventricles are the cavities in the brain that are filled with cerebrospinal fluid, and their enlargement suggested any number of conditions, including brain atrophy and Parkinson’s. They are also considered a red flag for NPH.

A neurologist in Bethesda had briefly considered NPH. He had done a spinal tap to withdraw a small amount of cerebrospinal fluid but ruled out the diagnosis when he saw no immediate improvement in my mother’s gait. But he may not have withdrawn enough fluid to see a change, experts told me.

One feature of NPH is passivity. My mother was forgetful at times, but what was more striking was her lack of initiative.Ìý She didn’t make plans as she used to. She’d start a knitting project and drop it. She may have been less aggressive than normal about pursuing her hunch about NPH being the source of her trouble. “One doctor told me, ‘This doesn’t run in families,’ ” she said.

‘We Believe It’s Overhyped’

Two years ago, doctors finally got it right.

My mother and stepfather had gone to visit friends in Gainesville, Fla. They urged her to make an appointment at the University of Florida’s Center for Movement Disorders and Neurorestoration.Ìý Doctors there suspected NPH as soon as they saw my mother walk across the room. They recognized the shuffling gait and what they call “magnetic” footsteps that seemed glued to the floor.

They sent her for additional tests, including a spinal tap to see if her walking improved after a large amount of cerebrospinal fluid was withdrawn — it did — and another imaging scan to rule out the possibility that the buildup was caused by an obstruction, such as a tumor.

Inserting a shunt is a dangerous operation: A thin tube is implanted in the brain to drain excess cerebrospinal fluid and release it into the abdomen.

“For some patients, [the surgery] can be life-changing,” said Michael Okun of the movement disorders center. But it is a high-risk operation, he said, especially in the elderly.Ìý About a third of patients who have shunt surgery experience a complication, such as an infection or a brain bleed that can lead to brain damage or death. “You have to be careful. A lot of people are shunted inappropriately,” Okun said.

Why was my mother’s diagnosis missed by so many, and for so long?

A friend whose mother was diagnosed with NPH by a gerontologist early on in the course of her disease told me the doctor made the diagnosis after seeing a story about NPH on “60 Minutes.”

But for many physicians, “the possibility just doesn’t come to mind,” said Michael Williams, who serves on the medical advisory board of the Hydrocephalus Association, an advocacy organization, because it’s so rare.

Physicians are trained to search for the most obvious, common conditions first. Although NPH was first described in 1965 and is taught in medical schools, the diagnosis is controversial, even contentious. There is no definitive test, and some experts have questioned whether it is a real syndrome. Studies of patients who had shunts inserted have had mixed results, and randomized controlled studies will probably never be done, both for logistical and ethical reasons.

Daniele Rigamonti, a neurosurgeon at Johns Hopkins School of Medicine who wrote and edited a textbook about NPH, is convinced that it is underdiagnosed and that many nursing home residents who seem to have Alzheimer’s or Parkinsons’ dementia may actually have NPH.Ìý He says it’s important to diagnose it early, before the buildup of pressure on the brain causes damage as the enlarged ventricles displace and compress adjacent brain tissue.

“To wait for the full triad [of symptoms] is foolish,” he said, referring to the three symptoms that define NPH: gait disturbance, incontinence and dementia. Even though it is a challenge to diagnose NPH when the only symptom is gait impairment, he said, “you don’t wait for a cancerÌýto metastasize and spread to the brain before you recognize it.”

Bryan Klassen, an assistant professor of neurology at Mayo Clinic, is not convinced. He contends NPH is extremely rare and is not being missed.

“We believe it’s overhyped,” he said, adding that the surgery is dangerous, “and a lot of the time the results are underwhelming.”

Lasting Improvements

My mother had shunt surgery two years ago, when she was 79 years old. The surgery lasted less than an hour and a half. I’m only writing about it now because surgical interventions, like sugar pills, can have placebo effects that don’t last very long. But I noticed a change immediately.

My mother went home the day after surgery, and my stepfather brought flowers. And then my mother did something that she hadn’t done in years: She walked over to the kitchen counter, gently removed the flowers from the paper wrapping, clipped and cut the stems and arranged them in a vase in a striking arrangement. She had always had a flair for flower arranging but hadn’t seemed interested for quite a while.

Today she is dramatically improved; her walking, memory and concentration are all better. Still, I can’t help wondering: Did the delayed diagnosis result in some permanent cognitive impairment?

She’s much less passive and can actually be very persistent. She asked me to write this article to inform people about NPH. “Have you written the article yet?” she asked recently when I called. “Please, write it.”

KHN’s coverage of aging and long term care issues is supported in part by a grant from .

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Several factors are driving the spending spike, including the introduction of expensive new hepatitis C drugs and fewer drug patent expirations than in previous years, the report found. Such expirations typically lead to savings as cheaper generics replace brand-name drugs.

The 11.7 percent rise is a dramatic departure from the more modest average increases of 3.6 percent in annual drug spending during the past five years.

The report anticipates the pace of spending increases will slow to 7 to 9 percent in 2015, as the impact of the new hepatitis C drugs declines, less expensive biosimilar products become available and several brand-name drugs — such as cancer drug Gleevac and the antipsychotic Abilify — are replaced by generics.

“We expect this bubble of innovation around hepatitis C will pass, so we won’t see such a contribution to growth in outer years,” said Murray Aitken, executive director of IMS Health. “We think the spike in growth will moderate next year, and further moderate in 2016.”

Drug costs are projected to increase between 3 percent and 5 percent in 2016, he said.
The new hepatitis C drug Sovaldi, made by Gilead Sciences and approved in December 2013, costs $1,000 a pill, with a 12-week course of treatment running about $84,000. Another hepatitis C drug — Harvoni — approved by the FDA in October, costs $1,125 a pill, or $94,500 for a 12-week course of treatment.

An estimated 3 to 4 million Americans have hepatitis C and are potentially eligible for treatment. Hepatitis drug treatments accounted for $8 billion of the approximately $40 billion in projected increased drug spending this year.

“The hepatitis C drugs are Exhibit A when you look at escalating drug costs,” said Brian Henry, a spokesman for Express Scripts, the country’s largest pharmacy benefits manager. “You never had a drug that costs that much that can treat so many people.”
The price of Sovaldi “caught payers by surprise,” he said.

Innovative new therapies, especially in the area of cancer, have also pushed up costs. The Affordable Care Act, which expanded access to health care and medications, may also have played a role, along with a new emphasis on preventive care and adherence to medications, Aitken said.

Holly Campbell, director of communications for the drug industry trade group, PhRMA, said the cost of developing drugs has skyrocketed, pointing to a report this week by the Tufts Center for the Study of Drug Development that estimated the price of bringing a drug to market at $2.6 billion. The process can take a decade, the report said.

“These most recent findings underscore the ongoing challenges our industry faces,” Campbell said.

An AARP report noted the increase in prices of brand-name drugs. The report found that the prices of 227 brand name prescription drugs used by many older Americans increased by 12.9 percent on average last year, well above the 1.5 percent rate of inflation, bringing the average cost of a brand-name drug used regularly to $3,000.

“We have started to hear from members who have to decide between taking a drug they need and paying their electric bill,” said Leigh Purvis, director of health service research at the AARP Public Policy Institute and a co-author of the report.

But, she added, the impact goes beyond seniors. “This is a concern not just for our members but for everyone.”

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What Paul Westbrook specialized in was customer service. His background is in the hotel business – Marriott and The Ritz-Carlton, to be precise.

He is one of dozens of hospital executives around the country with a new charge. Called chief patient experience officers, their focus is on the service side of hospital care: improving communication with patients and making sure staff are attentive to their needs, whether that’s more face time with nurses or quieter hallways so they can sleep.

It’s a dimension of hospital care that has long been neglected, patient advocates say, and it was put high on hospitals’ agendas only when Medicare started tracking patient satisfaction and, in late 2012, shaving payments to hospitals that fell short.

“There is a new recognition that the patient is important,” said Leah Binder, president and chief executive of the Leapfrog Group, an employer-based coalition that advocates for greater health-care quality and safety.

Hospital routines have traditionally been designed to suit employees, not customers, she said. “The patient used to be maybe 10th on the list of a hospital’s priorities.”

The financial penalties introduced by the Affordable Care Act are part of a broader effort to transform health-care delivery and improve quality while reining in costs, increasing transparency and holding hospitals and providers accountable for their work.

The penalties — which for now make up only a fraction of Medicare reimbursements — are based on a hospital’s ranking relative
to other hospitals. One component is how they do on surveys of recently discharged patients. The hospitals are judged on answers to such questions as how well their doctors and nurses communicated with them, how clean and quiet the hospital was, whether they received help when they needed it and how well providers explained the drugs they were given.

Many hospitals commission additional surveys to use for their own purposes, such as marketing and branding.

Chief patient experience officers treat these survey results like sacred texts.

“The one thing I’m not trying to do is to put a mint on the pillow,” said Westbrook, who reports directly to Inova’s president and chief operating officer. “This is a different customer, with very different needs.”

But as patients’ out-of-pocket costs have risen, he said, they have become savvier, more demanding consumers.

“They are going to look on the Internet and on Medicare’s site comparing hospitals, and they are going to read comments,” he said, and increasingly, they will select hospitals based on the reviews. “It’s no different from TripAdvisor.”

Lofty Goals, Practical Implementation

Unlike Westbrook, most chief patient experience officers rise through the ranks of a health system. Like him, though, they speak in lofty terms about teamwork, leadership and developing a philosophy and culture of compassion, service and respect at their institutions.

Westbrook, for instance, talks constantly about the “Inova promise” to “meet the unique needs of each person we are privileged to serve – every time, every touch.”
That phrase had “always hung on a wall,” Westbook said. “Now, we don’t begin a meeting without an Inova promise story.”

On the ground, the focus is doggedly practical. One common innovation is hourly rounds, a system where nurses are expected to check in on each patient regularly, not wait for the person to use the call button. And the interaction is supposed to be meaningful and thorough.

“This doesn’t mean just pausing at the door, saying, ‘Are you okay? Can I get you anything?’ and off you go,” said Susan Eckert, chief nursing executive at MedStar Washington Hospital Center. “We’re telling our nursing staff that you should actually sit down, look at the patient, talk a little bit, and give them several
minutes of time during which they are the only thing that exists in the world . . . It’s a very powerful experience.”

Hospitals that have put hourly rounding in place say the practice does not require extra staffing because it is more efficient to prevent problems before they occur. Taking time to reposition a patient prevents bedsores, for example, and helping patients to the bathroom prevents falls.

Another priority is having nurses call patients at home within 48 hours of their discharge, to keep their recoveries on track. (One Medicare question specifically asks patients whether they got good instructions about what to do when they get home. Hospitals can also be penalized if too many patients bounce back to them.)

Hospitals are increasingly taking their cues from patients, both by listening to the advice from new patient and family advisory councils and by using the surveys to identify weak spots.

At Yale-New Haven Hospital, where an executive director of patient relations and a medical director work together to improve the patient experience, officials have made a concerted effort to lower noise so patients can get optimal rest. Hospital staff are told to use “library voices 24/seven” and not to “vent” where patients might hear them. Overhead page calls have been eliminated, beepers are kept on vibrate, doors are closed when staff discuss cases and efforts are made to reduce alarms, pings and beeps at the bedside.

The Cleveland Clinic requires all 3,000 staff physicians to take a day-long relationship and communication class. In 2010, the hospital showed each doctor what patients had said about him or her in surveys. About half the comments were negative — and most of those had to do with how physicians talk to patients.

Doctors were stunned when they saw the results, said James Merlino, a surgeon who is Cleveland Clinic’s chief experience officer.

“Physicians were shocked, dismissive, disbelieving. They said, ‘This isn’t true, the methodology is bad, the sample size is too small,’ ” he said.

Now, he said, “we put physicians through communication training so they learn how to listen better, let the patient set the agenda and organize the encounter better.”

The result is a big increase in physician communication scores since 2008.

At UCLA Health System, parents of pediatric patients created an educational video about central-line catheters that is shown to physicians and nursing staff “to remind them how scary that catheter is for patients and their family members,” said Tony
Padilla, UCLA’s chief patient experience officer, adding that catheter-related infections can be
dangerous and even fatal.

“It drives home the message that during your very busy day as a nurse or physician, please remember: You’re accessing the child’s lifeline.”

Moving The Needle

Moving the needle on Medicare surveys can be a hard slog. Inova Mount Vernon’s composite score went up from 66.6 percent to 68.4 percent from 2010-11 to 2012-13. That means that on average, 68.4 percent of patients gave top marks to the hospital on survey questions in 2012-13. Scores at Inova Fairfax dropped and scores at Inova’s other three hospitals remained about the same.

Hospitals face a balancing act.

“We want to be attentive to a patient’s needs and wants, yet not do things just to please the patient, like overprescribing pain medication,” said Atul Grover, chief public policy officer for the Association of American Medical Colleges, which represents nearly 400 major teaching hospitals and health systems, in addition to U.S. medical schools. “You want to make sure patient satisfaction isn’t driving patient care.”

Some question whether the hospitals that score best on patient surveys are also the ones that provide the best care. Grover, for example, worries that hospitals that don’t offer amenities, such as single rooms, will be dinged in the surveys.

But some research suggests a strong correlation between patient satisfaction and outcomes, said Richard Staelin of Duke University’s Fuqua School of Business.

One of his studies, published in the journal Circulation in 2013, found that the death rate among heart attack patients was lower at hospitals where patient satisfaction scores were high, even when researchers controlled for the quality of care, meaning the care was equivalent.

Another study found higher overall patient satisfaction was associated with lower readmission rates a month after patients were discharged.

Studies have also found that hourly nurse rounds result in more-satisfied patients, with fewer falls and pressure sores.

“Patients co-produce the service,” Staelin said. “What I mean by that is that when someone is sick, the doctors can’t solve the problem without their help. … As a patient, I have to communicate with the doctor or nurse, I have to listen to the
doctor, I have to follow the instructions.”

“There are still lots of doctors who don’t believe it, but gradually the medical profession is coming around,” he added.

Indeed, several patient experience officers said some physicians at their hospitals resisted doing things differently until it was no longer an option.

The financial penalties “are brilliant,” Westbrook said. “That’s what’s driving change.”

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