Keeping super-users out of hospitals makes system healthier

For all its flaws, the federal Affordable Care Act is beginning to fulfill one of its missions: to change a health-care system that could only be described as sick itself.

While much of Obamacare focused controversially around health insurance, other provisions offered policy leaders an opportunity to develop and try out innovations in health care. In particular, the experiments were to target the existing fee-for-service system — where the financial incentive lies in bringing patients back, not in keeping them healthy.

That drive is funding a three-year pilot program in Allentown seeking to reduce health-care spending and bring more vigor to some of the most challenging patients needing care: so-called "super-utilizers." These patients with chronic, multiple illnesses consume a disproportionate and expensive amount of health services by constantly using hospital emergency departments and in-patient care.

With a $1.7 million grant through the Affordable Care Act, the Lehigh Valley Super-Utilizer Partnership formed in Allentown two years ago to bring a new health-care model to the region. As it undertook its work, the team came to a realization: They too are part of the health-care system that needs to change.

The partnership knows that systemwide changes begin with first steps.

Flor Rosario represents the many small steps the partnership has taken toward its goal. Her story is the kind of tale that shows promise for change following the partnership's intervention.

The Allentown woman says she was in and out of hospitals nearly weekly the last few years because a cycle of anxiety and asthma left her unable to breathe well. Through an interpreter, the 65-year-old native of the Dominican Republic, who now totes a portable oxygen system, said team members in the Lehigh Valley partnership taught her how to manage her anxiety, and thus, her breathing.

The team also reconnected Rosario to her faith, and her church community in turn helped her find an apartment on West Allen Street that she keeps spotlessly clean.

Rosario occasionally hosts get-togethers with other patients and team members, whom she now considers family members. "Having friends is very important when you're sick," she said. "Isolating is not good when you're having health problems."

She also has gone from those near-weekly visits to the emergency department to none. The last time she was in one for her anxiety and asthma, she said, was nearly a year ago.

Rosario now can walk for her groceries to the Little Apple Market a few blocks away on Seventh Street, an exercise that was too strenuous for her in the past.

"I take breaks," Rosario said, "but I'm independent."

Making health care work more effectively for patients like Rosario and more than 80 others in the program is challenging but exciting work to Dr. Abby Letcher, medical director of the partnership. Health-care reform that is "patient-centered" is a goal worth chasing, she said.

"There could be a real transformation in health care if we went as deep as those ideas call us to," she said. "But it means changing yourself in the process."

That might mean changing how the health-care system views a patient like Jenny Hassan. Last year, the Bethlehem woman's life was spiraling out of control, partly because of some poor choices.

She had gotten in trouble with the law. Unable to work since 2000, the Bethlehem mother of one was developing dozens of health concerns on top of chronic illnesses, including depression and bipolar disorder. She didn't help things by being inattentive at times to her diabetes.

"At that time, I really didn't care about my health," she said. "I didn't care about anything."

It was almost as if Hassan's ill health had become who she was and what she did. Meanwhile, the health-care system did little to stop her. Medicaid paid her health-care bills, and an admission into the hospital became something of a diversion for Hassan, who said it felt as if the only time she got out of her apartment was to go to the doctor's office.

Under the old scenario, Letcher said, the call of the patient and the response of health care doomed them to a repeating scenario. Ingrained in that relationship was a judgment by the physician blaming the patient for getting and staying sick, she said.

"I feel deeply, especially after a couple years with this program, that those tiny acts of judgment close down space for healing," she said. "Here we're working with this group of patients that triggers judgment more than any other group of patients in health care. So it's kind of more obvious here and the harm that it does is also more obvious."

Following the super-utilizer model popularized by Camden, N.J., Dr. Jeffrey Brenner, the Lehigh Valley partnership made self-examination a priority. Joshua Chisholm, deputy director of a faith community organization that's a key partner, said the message from Camden was that, "It's OK to fail, but fail quickly."

So instead of shaming Hassan, the partnership got into what Brenner calls the "messy space" — a relationship that's closer and more personal than the traditional doctor-patient relationship, with the end goal of autonomy for Hassan.

Hassan also cut back on her emergency room visits. "There were months where I didn't go to the emergency room," she said from her apartment a few blocks from St. Luke's University Hospital in Fountain Hill.

But Hassan again took a bad turn, going to the hospital three or four times over the last month of the summer for internal pain or arthritis, she said. That was followed by carpal tunnel surgery, with surgery on her leg related to her diabetes last month.

Under a different regime, Hassan might have been labeled a chronic, non-compliant patient and sunk deeper into her illness.

But patients are less likely to sink with the partnership there to buoy them. And when the cases are particularly nagging, they may get flagged in the monthly group sessions the team has. Dr. Jeffrey Sternlieb, who monitors the private sessions, says the process helps team members get past the power differential between caregiver and patient.

The partnership's empathetic approach has kept Hassan on the path to change. She said she wants to get through another carpal tunnel surgery and then get back to meeting other patients and hosting pot-lucks.

The health-care system had to change to give Hassan the chance to do the same.

In places all over eastern Pennsylvania as well as cities throughout the United States, health care providers are testing what kind of change works.

Doctors and insurance

However, other super-utilizer projects either locally operated or funded through the Robert Wood Johnson Foundation in New Jersey are undergoing trials in Philadelphia, Lancaster, York, Harrisburg, Doylestown, Pittsburgh and Springfield, Delaware County, to name a few.

Each is trying to identify the unnecessary services and excesses in the health-care system and direct the care to a more efficient and patient-centered process. In so doing, providers want to improve patients' health and spend less money.

A number of these programs, including the Lehigh Valley's, share notes about what works and what doesn't.

Health insurance companies already have that big picture, since they are asked to pay claims for large groups of patients. In contrast, caregivers lack the big-picture, but know the individual patients well, he said.

In this case, the difficult change is convincing insurance companies to share population information, said Etcherling.

"Knowledge is power and so payers don't want to give up all the knowledge they have," he said. "That's how they leverage their power."

Health-care providers also have a responsibility in reforming, he added. Since taking on the program, Etcherling said he and his staff now have daily planning meetings to talk about the patients' goals. In the past, the focus had been on achieving the staff's goals.

Some of the super-utilizer projects are a merger of health-care providers' and insurance companies' interests.

Crozer-Keystone Health System, with hospitals in Chester and Delaware counties, is in a multiyear trial of a cooperative payment model with Independence Blue Cross. Crozer clinicians are using primary-care practices to direct care among all the physicians a patient sees, the so-called "medical home" model. Independence Blue Cross has pledged to share with Crozer some of the savings the care provides, if Crozer's providers produce better outcomes and cost savings.

The Crozer-Independence model is similar to one that has received national attention at Geisinger Health System in Danville, Montour County, and its related insurance company. Since 2006, dozens of Geisinger's practices have been using the medical-home model to promote less expensive care up front, cutting down on more expensive care later on.

In a study published in June in The American Journal of Managed Care, Geisinger — not a part of the super-utilizer collaborative — followed thousands of diabetic patients who received standard care and those who received its "bundled" services. Patients in the latter category had their diabetes medically treated but also had a team working with the patient to explore other issues that may have led to the development of the disease, such as poor diet, lack of exercise or failure to administer insulin.

Researchers studying results found significant reductions in heart attack, stroke and diabetes-related eye disease in the patients who received bundled services. Overall, costs fell 6 percent for that group, said Dr. Thomas Graf, chief medical officer for Geisinger's Population Health initiative. In addition, 85 percent of patients and physicians said the care was better.

The result is desirable, Graf said, but the model is not for every physician practice. Just as in the Crozer-Independence program, the Geisinger plan requires letting go of power — in this case, on the physician's part.

Patients are getting more "touches" by the team, but fewer of them are by the physician, Graf said. "There's less physician time, but the physician time is spent on more important parts of the care."

Statewide, the experimentations show there is no simple formula for every location or patient group.

Etcherling, who finds the term "super-utilizer" pejorative, said the collaboration of five programs has produced a white paper for state health agencies and health-care providers as evidence of the need for continued support. Data up to the end of 2013, which did not include numbers from Harrisburg or the Allentown partnership, showed that emergency room visits for 138 people enrolled in their super-utilizer programs actually rose by 12 percent. However, in-patient visits dropped 34 percent, and those who were admitted had shorter hospital stays.

The programs had an estimated 12-month savings of $1.2 million to Medicaid, the research found.

That data are now being collected locally. In addition, researchers at Lehigh Valley Health Network also are learning from area patients about their larger health needs, which could include their personal relationships, housing, access to healthy food and transportation.

"We are leaving ourselves open to what we hear," said Samantha Goodrich of the Office of Health Research and Administration. "I think our only hypothesis is, they've been through a lot in the health-care system."

Another local model

To understand how difficult it is to reform America's health-care system, consider what is happening to one of the nation's most successful, long-running scientifically studied efforts to improve population health, while cutting use — a study that has involved people throughout eastern Pennsylvania, including the Lehigh Valley.

In that project, some patients, including seniors from Lehigh and Northampton counties, would receive HQP's program. Others would receive standard care. Then the health and cost-savings, if any, would be measured.

HQP focuses on a patient group including some super-utilizers and others whose health is not as severe, said CEO Kenneth Coburn.

As the years went on and independent evaluators looked at results, each of the other 14 projects withered away, leaving only HQP's project, which is ongoing through short-term renewals of its demonstration grant. So far, the data show it's working.

For sicker, chronically ill patients, hospital use dropped by 39 percent, compared to the group that received standard care. Emergency department use was 37 percent lower. Health care spending was 27 percent lower. The results remained durable over at least four years, Coburn said.

"Ours was arguably the most effective model in the country," said Coburn.

HQP is also directing its efforts into a project with Aetna and seeking other collaborators.

"We're anxious to work with anyone who understands the value and significance of what we are doing," Coburn said.

What happens now?

As the calendar winds down on 2014, officials at the Lehigh Valley Super-Utilizer Partnership have some decisions to make.

A Highmark Blue Shield Foundation grant will expire at the end of this year and roughly six months from then, the federal grant that got the partnership off the ground will end. The partnership will not meet the performance goals it thought it could reach at the outset — enrolling around 475 patients. As of last month, the team had enrolled just 86.

That's not a poor reflection of the program, however, said Rosemary Browne, formerly of the Highmark foundation.

Letcher, the partnership's medical director, says that now that the team has a few years of experience, the number of enrolled patients could increase by 50 percent. One thing hampering enrollment is that the staff hasn't been able to enroll patients while they're in the hospital. Finding those patients at their homes slows enrollment considerably, she said.

Another challenge is data. Brenner's system took shape after he collected patient data from hospitals in Camden, where he practices. By analyzing the records, Brenner was able to detect patterns that would not be apparent to clinicians dealing with one patient at a time.

The local partnership has only recently begun gathering its first batch of data, so it may only begin seeing the bigger picture of local super-utilizing patients after more than 80 percent of its grant life has passed. The Rutgers Center for State Health Policy, which is overseeing the federal grant funding the Lehigh Valley project, is just starting to do the analysis.

Going forward, Letcher said state health officials have been "receptive" to the program and may want to have a role with it. The partnership could possibly live on if the state wins approval for a new $100 million federal innovation model grant. It's expecting a decision soon.

The partnership also is going to look to Allentown's hospitals to keep its work going, Letcher said. Sacred Heart Hospital has been a partner from the start, incorporating parish nurses into the program. "I think they understand the community nature of this," Letcher said.

In addition, the partnership has begun working with two Community Care teams at Lehigh Valley Health Network family practices, which are based on another patient-centered medical home program developed in Vermont. "I think this relationship with LVHN really sets us up to do some exciting research about the model," Letcher said.

St. Luke's University Health Network has a strong electronic health record system, she added, so the partnership is hoping to tap its expertise to provide real-time patient information, a vital need in ending the enrollment bottleneck and tracking patients' progress.

The partnership "is providing a service that a lot of entities are unable to do," Chisholm said. "So there's a need and a population. There's a business model there."

What is a "super-utilizer?"

Generally, they are patients who are among the top 1 percent based on their health care expenses, not including trauma victims or patients who require regular, expensive care such as chemotherapy. They often have multiple poorly managed chronic and behavioral health illnesses, lack social support and are frequent users of hospital emergency departments. Because their health needs are so complex and their care uncoordinated, these patients frequently require expensive hospitalizations.

Cost of their care

In 2010, "super-utlizers," or the top 1 percent of patients as ranked by health-care expenses, accounted for 21.4 percent of total health-care spending. Their average annual health-care expenditure was $87,570. The top 5 percent of patients ranked by health-care expenses accounted for 50 percent of total health-care spending. The average annual health-care expenditure was $40,876.

Source: U.S. Agency for Healthcare Research and Quality

The Partnership

These organizations are involved in the Allentown Super-Utilizer Partnership: Neighborhood Health Centers of the Lehigh Valley; The Community Exchange; Parish Nursing Coalition of the Greater Lehigh Valley; and POWER Pennsylvanians Organized to Witness, Empower and Rebuild.

Photo by Harry Fisher/The Morning Call.

This story was originally published in The Morning Call.