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The privacy of students who get care at university clinics is in doubt after the mental health records of a women who says she was raped at the University of Oregon were accessed by the school in the course of defending itself against a lawsuit.

The unidentified student is suing the university for mishandling her assault. She says she was raped by three basketball players last year. The University of Oregon found the players responsible, kicked them off the team and out of school.

But there was no court case. Nobody was found guilty of any crime. And it was only discovered later that one of the players had been suspended from a previous college team over allegations of another sexual assault.

Those are some of the reasons the woman sued the university. Here’s where the privacy issues surface:

The student got therapy at the university’s health clinic. In preparing to defend itself against her complaint, the university accessed those records and sent them to its attorney.

Kelsey Jones, 21, is a student at the University of Oregon who works with the student-run Organization Against Sexual Assault. She says the case has shaken students’ confidence in the mental health care they receive on campus, and she won’t go to the campus clinic.

“It’s very concerning for a lot of people,” Jones says. “It’s ten times harder now to seek that help and feel safe and feel okay to share 100 percent of what you’re feeling.”

Two employees at the university’s counseling center were also disturbed by the school’s actions, and they fired off an open letter to the university community. One of the authors, therapist Jennifer Morlok, said her job was threatened and she felt the school was forcing her to violate her professional ethics.

The university administration would not talk on tape for this story. But in court papers, officials argued that since the student went to the school’s health clinic, her health records belong to the school and therefore could be accessed.

In addition, they argued that because she claimed emotional distress –a medical claim – the school was entitled to her medical records under a law known as FERPA – the Family Educational Rights and Privacy Act.

Steve McDonald, a FERPA expert and an attorney for the Rhode Island School Of Design, says in this case the medical privacy law known as HIPPA doesn’t apply, and the school is within its rights under FERPA.

“I would think in almost any case anywhere in the country in a fear and emotional distress claim, those records would be relevant, and you would get them through some process,” McDonald says.

Under FERPA, at a university run health clinic, the university can access student medical records — if they’re relevant for a legal defense. That may come as a surprise to anyone who assumes that doctor-patient privilege is the same regardless of where the care is received.

Another FERPA expert, Gonzaga Law School professor Lynn Daggett agrees the university is within its rights. She says the situation allows universities to avoid an important legal process, simply because the therapist is a university employee. “The way the school would access the records in the situation with a private therapist is that during discovery, before trial, they would ask her to voluntarily agree or issue a subpoena for them,” Daggert says.

“She would have every right to make a motion to the court to quash or modify the subpoena, have the court look at her medical records in camera, which means in secret in the judge’s chambers, and have the court sort through what appropriately would be shared with the school and what would not be.”

The issue has caused such a stir, the US Department of Education spokeswoman Denise Horn weighed in on the need to protect confidentiality in a statement emailed to reporters.

“FERPA would permit the treatment records to be disclosed in litigation between the student and the institution if the records are relevant for the institution to defend itself.”

But the statement concludes: “The Department of Education urges higher education institutions to not only comply with FERPA, but also to respect the expectation of confidentiality that all Americans hold when talking to a counselor or therapist.”

Back on campus, student Kelsey Jones remains unsatisfied with the legal explanations: “Whether it’s legal or not legal, I think it’s morally and ethically not right.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Starting next year, the federal government will require health insurers to give millions of Americans enrolled in  Medicare Advantage plans or in policies sold in the federally run health exchange up-to-date details about which doctors are in their plans and taking new patients.

Medicare Advantage plans and most exchange plans restrict coverage to a network of doctors, hospitals and other health care providers that can change during the year. Networks can also vary among plans offered by the same insurer. So it’s not always easy to figure out who’s in and who’s out, and many consumers have complained that their health coverage doesn’t amount to much if they can’t find doctors who accept their insurance.

Under a rule published last month by the Centers for Medicare & Medicaid Services, Medicare Advantage plans must contact doctors and other providers every three months and update their online directories in “real time.” Online directories for policies sold through healthcare.gov, the health law exchange run by the federal government in 37 states, must be updated monthly, CMS announced in a separate rule.

Inaccuracies in the Medicare Advantage directories may trigger penalties of up to $25,000 a day per beneficiary or bans on new enrollment and marketing. CMS will also use the directories to help determine whether insurers have enough doctors to meet beneficiaries’ needs.

The federal exchange plans could face penalties of up to $100 per day per affected beneficiary for problems in their directories.

“Studies have shown massive error rates in these directories, including states in the federal exchanges,” said Lynn Quincy, associate director for health policy at Consumers Union. “If consumers select a health plan because they believe their hospital or physician is a participating provider and it later turns out that’s an error, right now they rarely have a remedy–they are stuck with that plan for the year.”

“Regulators also rely on these provider directories to make assessments about network adequacy,” said Quincy.  “And when provider directories include physicians who have died, moved out of state, or aren’t accepting new patients, we are overstating how adequate the network is.”

The administration last year announced rules designed to make sure those networks have adequate  numbers of providers. The newest rules will help guarantee that consumers get good information on those networks.

Nearly 9 million people have enrolled in plans on the federal marketplace for 2015, according to officials.

Some states running their own health exchanges, including New York and California, also require frequent directory updates.

Californians have had trouble finding doctors in their plans and others who were misled into thinking their providers were in network have been “socked with huge out-of-network bills,” said California Insurance Commissioner Dave Jones, who issued an emergency regulation requiring plans to update their directories weekly.

The new Medicare Advantage rules are a response to complaints from beneficiaries and doctors about “directories including providers who are no longer contracting with the [plan], have retired from practice, have moved locations, or are deceased,” CMS officials said in the notice to insurers. Some directories also list providers who are still in the plan’s network but not available to new patients.

About 16 million seniors have signed up for the private Medicare Advantage plans, which are an alternative to traditional Medicare.

“We have had clients either start treatment with a doctor who doesn’t stay in the network for the  whole year or think they are they are picking a plan that covered a certain doctor and then found out it did not,” said Jen Tayabji, coordinator of the Champagne County Health Care Consumers’ Medicare task force in central Illinois. Because most Medicare Advantage members are locked into their plans for the calendar year, she said they often don’t have good alternatives when their provider networks shrink.

“It is critically important that people with Medicare have timely access to the information they need to make decisions about their care,” said Medicare spokesman Raymond Thorn. “Reflecting this priority, Medicare will be requiring health plans to ensure that their online directories are up-to-date and accurate as soon as their networks change.”

Medicare Advantage plans had mixed reactions to the new rules. Some are concerned about increased cost of compliance. Matt Burns, a spokesman for UnitedHealthcare, one of the largest Medicare Advantage providers, said the company was still reviewing the rules. Other companies referred questions to an industry trade association, America’s Health Insurance Plans.

“It’s important to keep in mind that maintenance and accuracy of online directories is a two-way street, and it is often difficult getting providers to report changes in their status in a timely manner,” said the association’s spokeswoman Clare Krusing.

“This is definitely the direction that we need to go to make sure the Medicare Advantage plans don’t gut their networks,” said Mark Thompson, executive director of the Fairfield County Medical Association, which sued UnitedHealthcare in 2013 to stop the terminations of Connecticut doctors from its Medicare Advantage plans.

Cigna’s Medicare Advantage directories are updated weekly during the open enrollment period and monthly the rest of the year, said spokesman Joe Mondy.  Aetna’s Medicare Advantage directories are updated nightly, six days a week, and weekly for directories from subsidiary Coventry, said spokesman Kendall Marcocci.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

In her Manhattan apartment, Josephina Deltejo is trying to coax her 84-year-old mother Brunhilda Ortiz to get ready to leave the house. As she does most nights, Deltejo makes up a story to get her mother, who has dementia, to cooperate.

In Spanish, Deltejo asks her mother if she would rather go to Miami or the Dominican Republic. “She says she wants to go to the Dominican Republic,” Deltejo translates, and then she helps the older woman gather her things and go downstairs to a waiting van. The driver will bring her mother to the Elderserve At Night program at the Hebrew Home At Riverdale in the Bronx. It’s a kind of day camp–but at night, for people like Ortiz who suffer from Alzheimer’s disease.

Deltejo says her mother was once a proud, hard-working immigrant who raised four children on her own, but she has changed. “Her memory has been totally lost. She’s very disoriented,” Deltejo says. “She doesn’t communicate at all.”

For months, Ortiz would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep—afraid her mother might fall and hurt herself or even try to leave the apartment.

“She wanted to sweep the floor. She wanted to watch TV. She wanted to clean the bathroom,” Deltejo remembers. “She wanted to go out. This is at one, two o’clock in the morning.”

But now Deltejo is finally getting some sleep – and her mother is being well cared for along with about 40 other clients seven nights a week. Activities may include arts and crafts, cooking, yoga or Zumba, and even live performances. On the night we visited, Juan Ortega played American and Spanish favorites on his synthesizer.

Though it looks like entertainment, each activity has a therapeutic benefit for memory-compromised people, says Deborah Messina, who runs the overnight program. She described a common problem among dementia patients known as “sundowning.” It is thought to affect about 20 percent of Alzheimer’s patients.

“Their day is our night and vice versa, and they are confused about it,” Messina says. “It is usually at dusk where an agitation comes, a confusion comes.”

Many people with dementia are more alert at night than they are all day – just when their caregivers need to sleep. Rather than try to alter this mismatch, Elderserve At Night embraces it.

The program is the brainchild of David Pomeranz, the executive director of the Hebrew Home, who opened the program in 1996. He says the idea came to him after hearing heartbreaking stories from struggling families.

“People were sleeping in front of doorways because they were concerned that mom or dad would wander out of the house,” Pomeranz says.

Those families desperately needed a safe place for their loved ones at night — and a decent night’s sleep. And the Hebrew Home set out to meet that need.

It’s a similar philosophy – to meet clients’ needs wherever they may be – held by the therapists and social workers who staff Elderserve now. “Here, their behaviors are normalized,” Pomeranz explains. “Everything is OK. Activities are structured for them to be successful. They eat, they relax — they can be themselves. To us is this is who they are. We’re not the family members who are dealing with that incredible loss of seeing someone who was and isn’t any more.”

The program is covered by some private insurers and by New York Medicaid, the federal-state program for poor and disabled people. To the extent that it can keep people out of nursing homes, it can save money.

Medicaid pays a typical nursing home in New York about $320 per day versus $200 for the overnight program. But so far, few if any other overnight programs exist solely for people with dementia. Pomeranz thinks the idea hasn’t caught on with other nursing homes because it is difficult to find staff who are willing to work the overnight shift. It was also important to get Medicaid and other insurers to reimburse for the program, and that funding has not been pursued in every state.

Elderserve At Night tries to serve its clients even as their conditions worsen. Next door to the room where Ortiz and others are dancing and enjoying the live music, it feels like another universe. The music is soft, the lights are low and a subtle scent of lavender is in the air. People with more advanced disease spend the evening here. Some are sitting around a table, each with a caseworker, who helps them work with blocks and basic puzzles.

Several other people are slumped in wheelchairs, getting hand massages from the social workers. Though their faces look expressionless, they seem calm. For people with advanced dementia who might otherwise become agitated at night, this room is a sanctuary, says Messina.

“We’re engaging them on their level. And being able to do that might be through touch, it might be through sound, it might be through smell,” she says. “It works for them. It gives them a sense of serenity.”

When the sun comes up tomorrow, all the clients will be given breakfast and everyone here will return home. Ortiz will take the van back to her apartment in upper Manhattan where she will be greeted by her daughter before she leaves for work. Deltejo says she doesn’t know exactly what happens during her mother’s nightly sojourns, but she is grateful.

“She was very weak when she started there. We had to carry her up and down [the stairs}. But now she walks up and down. She walks to Broadway,” Deltejo says. “She would not react to any of the conversation. Now she does. She’s a totally new person. I would say she’s 200 percent better.”

Deltejo says the program helped to improve her mother’s life and her own life as well. But Ortiz was battling congestive heart failure, and she succumbed to the disease a few months after we reported this story.

This story was produced in collaboration with NPR and WBUR’s Here & Now

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

“Dream grounds for a dream hospital”: in this promo film from 1950 about a model Kaiser hospital, we see babies being slid through walls in “drawer-like bassinets”, suited husbands smoking endless cigarettes awaiting their wives’ childbirth, and hospital rooms with sliding doors that open up to a terrace with a swimming pool. Not to mention Continue Reading

Technology entrepreneur Jonathan Bush says he was recently watching a patient move from a hospital to a nursing home. The patient’s information was in an electronic medical record, or EMR. And getting that record from the hospital to the nursing home, Bush says, wasn’t exactly drag and drop.

“These two guys then type — I kid you not — the printout from the brand new EMR into their EMR, so that their fax server can fax it to the bloody nursing home,” Bush says.

In an era when most industries easily share big, complicated digital files, health care still leans hard on paper printouts and fax machines. The American taxpayer has funded the installation of electronic records systems in hospitals and doctors’ offices – to the tune of $30 billion since 2009. While those systems are supposed to make health care better and more efficient, most of them can’t talk to each other.

Bush lays a lot of blame for that at the feet of this federal financing.

“I called it the ‘Cash for Clunkers’ bill,” he says. “It gave $30 billion to buy the very pre-internet systems that all of the doctors and hospitals had already looked at and rejected. And the vendors of those systems were about to die. And then they got put on life support by this bill that pays you billions of dollars, and didn’t get you any coordination of information!”

Bush’s assessment is colored by the fact that the company he runs — Watertown, Mass.-based athenahealth — stresses easily sharing electronic health records using the cloud. It also got a lot of the federal cash.

Dr. Robert Wachter, a hospitalist at the University of California, San Francisco, says sure — in hindsight, the government could have mandated that stimulus money be spent only on software that made sharing information easy. But, he says, “I think the right call was to get the systems in. Then to toggle to, ‘OK, now you have a computer, now you’re using it, you’re working out some of the kinks. The next thing we need to do is to be sure all these systems talk to each other.’ ”

Right now, the ability of the systems to converse is at about a 2 or 3 on a scale of zero to 10, Wachter and Bush agree.

Wachter is about to publish The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age, which assesses the value of information technology in health care. Up until now, he says, there has been a financial dis-incentive for doctors and hospitals to share information. For example, if a doctor doesn’t have a patient’s record immediately available, the doctor may order a test that has already been done – and can bill for that test. Keeping EMRs from talking to each other also makes it easier to keep patients from taking their medical records — and their business — to a competing doctor.

It’s time for that to change, says Dr. Karen DeSalvo, the federal government’s health IT coordinator. She is setting some standards for how to share digital information.

“The time of letting a thousand flowers bloom, and having a set of standards that are quite variable, should come to an end,” she says. “We should be working off the same set of standards.”

The billions of dollars a year the government pays out to doctors, hospitals and other institutions for patients enrolled in Medicare is a pretty good motivator. Already, Medicare is starting to increase pay to doctors and hospitals that work together to streamline care and avoid duplicative tests, and to penalize those that don’t. Winning the new payments and avoiding the penalties increasingly require proving that all of a patient’s doctors, no matter where they are, are working together. That means using electronic records that can seamlessly move from one system to the next.

Wachter says that consumers are now demanding better health information technology, too – “because we’re all used to our app stores and we know how magical it can be when core IT platforms invite in a number of apps.”

“So I think,” he says, “that even the vendors and healthcare delivery organizations that have been fighting interoperability recognize it’s the future.”

He says a lot of IT companies are now eager to come up with software that meets the demands of both the health care industry and consumers. About a dollar of every $6 in the U.S. economy is spent on health care. A new IT boom in that sector means there are billions of dollars to be made.

This story is part of a partnership that includes Montana Public Radio, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.