The Biggest User

From the July issue of Integrated Healthcare Delivery.

It’s ironic, but you can understand why those who utilize the healthcare system the most can get the worst care from it. 

Often they’re patients who have chronic and complex conditions but lack primary care. Their lives may be complicated by poverty, addiction and mental illness. They seek care from multiple clinicians in various venues for different reasons. That care is episodic, fragmented and not followed up. Tests and services are repeated, knowledge isn’t shared, and limited resources are wasted. 

These are the superutilizers, and while they can account for a prodigious percentage of your local healthcare costs, their outcomes are often suboptimal precisely because their care is not integrated, coordinated and holistic. 

That’s what really chafed the physicians and others who came to Jeff Brenner’s breakfast meetings a decade ago. Healthcare front-liners from around Camden, NJ, they were invited by Brenner, a reform-minded young primary-care doc working a hardscrabble part of town, to discuss the challenges they faced delivering care in the decaying city. 

Camden was and is a rough place. It’s regularly among America’s most dangerous cities. Around 40% of its residents live below the poverty line, and they have high rates of things like asthma and obesity. Crunching some hospital billing data back then, Brenner found just 1% of the people who used Camden’s hospitals racked up 30% of their costs. The superutilizers were a problem for everyone. 

As the breakfasts became more popular and their attendees more diverse—coming to include specialists, nurses, PAs, social workers and other health advocates—a consensus developed: The problems everyone found so vexing might better be addressed with a completely different, inclusive kind of care, designed from the bottom up and driven by those with the closest perspective: the doctors themselves. 

“We’re the ones who see day to day what’s broken in the healthcare system—the front-line primary-care docs, the EMS workers, the nurses in the emergency rooms,” says Brenner. “And we all struggle with challenges that are beyond our ability to solve by ourselves.” 

But together perhaps not. From that breakfast club emerged the Camden Coalition of Healthcare Providers. Led by Brenner—who last year received a $625,000 genius grant from the John D. and Catherine T. MacArthur Foundation for his work—the Coalition became a formalized nonprofit aimed at improving healthcare delivery and lowering costs among Camden’s biggest users. It’s having success that’s both demonstrable and potentially replicable. 

Community Organizers

Take its Care Management Program, which employs an embedded nurse care manager/medical home model to ease superutilizers’ transitions from hospitals to outpatient care and help them avoid rehospitalization. 

When a patient with special medical and social needs is identified, they’re visited in the hospital or wherever they are by a team that includes a nurse practitioner, a social worker and a health outreach worker/medical assistant. The team confers with doctors, reviews the patient’s medications and ascertains what they’ll need upon discharge. Once the patient is home, they’ll soon visit again and then provide continued support for up to nine months. They may help the patient find primary and specialty care, go with them to appointments and arrange social services, including temporary shelter. At the conclusion, hopefully, the patient will be equipped to better manage their affairs on their own. 

This appears to reduce future problems and save money too. The first 36 patients involved in the Care Management Program averaged 62 hospital/ED visits a month before care-team contact, but just 37 after. Their average monthly hospital bill went from $1.2 million to around $500,000.

There’s another, similar group of medically complex, high-cost patients with less-severe social issues and primary care that’s more consistent but not coordinated. The Care Transition Program launched in 2011 to reduce their readmissions uses a nurse and health coach (see sidebar). They assist patients at a pair of local federally qualified health centers and are working to help those establishments become patient-centered medical homes that will use nurse care coordinators to manage care transitions.

Obviously programs like this require connections across the healthcare and social-services spectrum. Much of the Coalition’s early days were spent enlisting colleagues and forging those partnerships; now they’re well linked to physicians, hospitalists, specialists, social workers and nurse discharge planners throughout the region. In this manner, the heart of integrated healthcare is a kind of community organizing.

“We’re using the kinds of skills community organizers use to find common ground and work together to solve problems that hurt both of us,” Brenner says. “For example, homelessness in our city is a huge issue, and homeless patients are very difficult to deal with in a practice. They’re difficult for hospitals to deal with, they cause problems for the police, and they don’t do well. So how can we work together to find a better solution?” 

Who You See the Most

Central to these efforts is the Coalition’s Health Information Exchange (HIE). This grew out of the early hospital data Brenner started with (see sidebar) and now contains patients’ electronic health records with all their treatment history and notes. Providers, social workers and others can access these from anywhere and exchange communication within them as care progresses. 

The HIE also provides real-time alerts when tracked patients are seen at hospitals and provides aggregate clinical and utilization data to help spot trends and opportunities for intervention. All the local hospital systems participate, along with numerous other players. Data includes admission, discharge and transfer actions, laboratory results, radiology reports, medication reconciliation and discharge summaries. 

To work with superutilizers on any sort of large scale, you’ll need something comparable. But to get started requires nothing so elaborate. 

“At the beginning of it,” Brenner says, “you can go to any EMS or emergency department provider anywhere in the country and say, ‘Name the person you see the most.’ They’ll tell you off the top of their heads. You don’t have to have the data to get started.” 

When you find these patients, start with their hospital billing data, obtainable if they’ll sign a release. Let that lead you to the partners appropriate to help each patient. Their needs may differ, so don’t force a template on them. Start lean. There are tools on the Coalition’s website (www.camdenhealth.org) to help you get going. 

A final piece to the puzzle is educating not only your patients, but the community at large to the nature of these ongoing problems. Once you know your patients’ stories, tell them. Enlist the power of the public to foment change. 

“What we need to do, and probably the best advice I can give, is that we need to empower these patients to start telling these stories,” says Brenner. “We need to talk to the media. Don’t hesitate to say to patients, ‘The system is pretty darn broken, and we think people like you get really bad care. Let’s work together to tell your story. Could you sign this release form? Then we’ll have you talk to the paper and tell them how hard it is to get in to see the doctors. Tell them about the struggles you’re having.’

“Talk to the media and pull the data sets out. Everyone thinks we have the best healthcare system in the world until they actually see it up close.” 

Health Coaches

Health coaches are advocates integrated into care teams who work closely with patients to help them manage their medical affairs. The Camden Coalition uses AmeriCorps volunteers pursuing careers in medicine or nursing.  

Initially coaches may go with patients to their medical appointments. Many patients who typically seek primary care at the ER, the Coalition notes, aren’t used to waiting for regular doctors; the coach helps educate them to appropriate use of the system. As they wait, coaches can help patients consider their conditions and prepare questions for the doctor. This gets them more engaged in their care and results in a more effective office visit. 

Other common activities for health coaches include helping patients make and track their own appointments and find transportation to and from them, which may mean mastering public transit. 

In the Care Management Program, nurse providers typically take the initial lead, but health coaches step in once goals are identified and patients are stabilized. They visit regularly to reinforce instructions and provide support, and report progress and setbacks back to the nurses. Ultimately they release the patient to their primary care provider. 

“Overall,” the Coalition says, “the role of the health coach is to teach the necessary tools for patients to properly navigate the healthcare system. The nature of our programs is finite; the goal is for patients to ‘graduate’ to PCP offices that will serve their medical needs.” 

Hot Spotting

The data that ultimately led to the Camden Coalition was initially obtained as part of a thwarted police-reform project. Brenner used hospital billing data to map where crime victims lived. Beyond that, he began studying how patients flowed through the local hospital system. Looking at ambulance transports, for instance, he found 57 falls by elderly patients in two years at one address, resulting in almost $3 million in costs. 

Brenner took that data to construct block-by-block maps showing Camden residents’ hospital costs, looking for “hot spots.” (This echoed the NYPD’s successful CompStat approach to fighting crime.) The two biggest he found were one that had a large nursing home and one that had a low-income housing project. In 6½ years, people in those buildings accounted for more than 4,000 hospital visits and $200 million in bills. 

By intervening directly with people like that, Brenner figured, he could both help them get better care and reduce their costs. He began meeting with local ED docs and social workers and sharing the patterns. He asked to meet their biggest users. Working with the first few led to more, then more, then the Coalition.

Physician-author Atul Gawande profiled the experience in his seminal 2011 New Yorker article “The Hot Spotters.” Brenner told Gawande, “In the next few years, we’re going to have absolutely irrefutable evidence that there are ways to reduce healthcare costs, and they are ‘high touch,’ and they are at the level of care. We are going to know that, hands down, this is possible.”

Other Solutions

Other solutions from the Camden Coalition:

• Northgate II—At the troubled housing project Brenner’s data identified as a hot spot, steps included a new doctor’s office within the building residents can use for care needs instead of calling 9-1-1. A doctor staffs it twice a week; a medical assistant covers other times. The emphasis is on building relationships and trust with patients; they’ll go so far as to knock on doors if patients miss appointments. 

• Good Care Collaborative—The Coalition leads the local Good Care Collaborative, a coalition focused on Medicaid reform and determining what “good care” should actually entail for underserved locals. See www.goodcarecollaborative.org. 

• New Jersey Medication Access Partnership—NJMAP helps patients who can’t afford medications connect with pharmaceutical company programs that provide them at low or no cost. A Coalition program coordinator works with patients to streamline the application process and provide education. 

• Diabetes Collaborative—Camden’s diabetic population exceeds national averages. The Coalition works to increase local capacity to care for patients with diabetes; increase sufferers’ self-management abilities; and improve care coordination for diabetic patients across practices, hospitals and health systems. The Diabetes Collaborative is part of a greater effort to convert community-based primary care practices to patient-centered medical homes.