Can Building Relationships Help Engage High-Need Patients?
By Brian Schilling
For a certain subset of patients, the thing that often gets in the way of receiving high-quality health care is simply being sick. Or rather, being very sick. Going to the doctor — unfamiliar, unpleasant, and confusing in the best of times — can be downright unmanageable for individuals facing overlapping and/or complex health conditions:
How will I get to the doctor? What will they find? What will I have to do? How will I remember it all when I feel so terrible?
This subset of very sick patients gets a lot of attention in medical circles for the simple reason that the care they receive is extremely expensive. They are referred to properly as high-need, high-cost patients. They are among the 5 percent of patients who account for about 50 percent of health care spending, much of it on ineffective or inefficient care. It’s an article of faith among many in the health care world that if we could just improve care for this group, we could save an enormous amount of money.
But how, exactly?
To be sure, there’s no easy answer. By definition, high-need patients typically suffer from three or more chronic conditions, and also have some sort of functional limitation that interferes with basic daily activities. Pair that with cultural, social, economic, or other challenges and it is easy to see why such patients might be unable to engage with health providers and get needed treatment.
There are more high-need patients than you might think: nearly 12 million Americans fit into this category. Many of them have trouble getting the right care at the right time. A recent Commonwealth Fund survey of high-need patients found that 44 percent reported delaying care in the past year because of an access problem such as lack of transportation to the doctor’s office, limited office hours, or an inability to get an appointment quickly enough. These problems can ultimately lead to more and more expensive care.
Collectively, high-need patients account for more than $120 billion in health care spending each year. But for all the money spent on their care, by most estimates these patients are not always receiving the best care. To get a better sense of why that might be so, imagine a well-meaning doctor stepping into the batter’s box to stare down whatever illness might be thrown across the plate only to find four other doctors all crowding the same space, all swinging wildly at other pitches. It’s not a scenario that leads to good medicine.
Efforts to improve the lot of the high-need patient are still being tested and evaluated. Team-based initiatives with case managers such as social workers or nurses working within a medical home setting show some promise. More recently, a handful of programs have taken a different tack, emphasizing relationship-building and focusing more intently on meeting patients’ nonmedical needs outside the doctor’s office. These programs typically pair patients with a dedicated care coordinator, who may or may not have extensive medical training, but knows the system well enough to help patients navigate it. Importantly, these care coordinators also typically know how to advocate on behalf of patients for housing, mental health, legal, nutritional, transportation, and other nonphysical needs. They typically spend part of each day in the field and are quick to share stories about going shopping with patients (to buy undergarments, for instance), helping fill out paperwork (to apply for Medicaid), or simply driving patients to and from appointments. Patients usually love their care coordinator and the feeling is often reciprocated.
What follows is a look at some of the programs, patients, and care coordinators involved these kinds of efforts in Los Angeles, Chicago, and Minneapolis. Their stories speak to the value of this simple, human approach to engaging high-need patients and improving their care.
Tanya, 46, Los Angeles
A Helping Hand for a First-Time Patient
For most of her life, Los Angeles-area native Tanya had little time or use for the health care system. Through her 20s and 30s she mostly felt fine and was too busy getting on with the business of life — jobs, bills, relationships, keeping up with family and church — to bother with going to the doctor.
But later, even as various health issues started to worry her, she could never quite bring herself to find a clinic, even a free one, and check in for a diagnosis. The thought of it was intimidating: How much would it cost? What would they find? What kinds of questions were they going to ask? And how do you talk to a doctor, anyway? It was simply easier not to go.
Then, about 18 months ago, Tanya woke up light-headed and out of breath. She knew she couldn’t put off going to the doctor any longer.
Tanya was extremely lucky that day. At a free clinic on the south side of L.A. she saw a caring and able physician (a Dr. Monroe, she recalls) who diagnosed her with hypertension, cirrhosis, asthma, and high blood pressure. She suddenly faced a textbook full of medical conditions and a hopelessly complex schedule of medications, recommendations, and further tests.
“It was a little overwhelming,” said Tanya. “I knew I wasn’t even going to try to do everything they told me I should do.”
But Tanya was no longer on her own. Unbeknownst to her, that caring physician from the free clinic had referred her case file to a new L.A.-area program called Care Connections, which pairs high-need patients with community health workers tasked with building relationships with their patients, helping them manage their conditions, and showing them how to take advantage of available area resources and support. About 50 such case workers take care of several hundred patients throughout Los Angeles at any given time.
“The relationship piece of what our community health workers do is paramount,” said Heidi Behforouz, M.D., medical director of Care Connections. “That’s how you get people engaged in the system, by showing them that you care and that you can help.”
The day after her doctor’s appointment, Tanya’s assigned community health worker, Deondra Carter, called to introduce herself. Carter, who goes by the name “Ms. Dee Dee” because it’s less formal and easier to remember, is also an L.A.-area native, and the two hit it off immediately. And that’s no accident: Care Connections looks specifically for people like Ms. Carter — who has a long history of involvement in community service and outreach efforts — based on the assumption that a shared background will help foster the relationships that program leaders believe are critical to engaging the patients they seek to help.
“I was surprised she called,” said Tanya. “But I’m so glad. I think she could tell right away that I didn’t really know what was going on.”
Since that initial phone call, Ms. Dee Dee has been a regular fixture in Tanya’s life, helping her navigate the health care system, follow her complex medication schedule, and generally take better care of herself. Among the hardest lessons, says Tanya, was just learning to slow down. But over the past year, she’s made real progress: her blood pressure is a little lower, her asthma is under control, and she says she feels better today than she has in the past five years.
Still, Carter typically accompanies Tanya to the doctor, sometimes even helping to arrange transportation. They’ve been to the supermarket together (for lessons on healthy eating) and have even talked about taking a yoga class together, but that’s an outing that is still some ways off, according to Tanya.
“For now, I’m walking more,” said Tanya. “I like to go around the block to see neighbors.” She also has set some concrete goals for herself, in terms of losing weight and staying on her medications. She’s adamant that all her progress to date would not have been possible without Ms. Dee Dee’s support and friendship.
“She has really been my angel,” said Tanya. “Who knew there was so much to learn about being sick?”
Laren, 62, Chicago
Through Blurred Vision, a Glimpse of Hope
In some ways, Laren may be the luckiest member of her very large family. With seven sisters and two brothers, she was the last member of the troop to be diagnosed with diabetes, in 2006. This shared family curse has left one brother on dialysis and a double amputee; several have vision problems and trouble walking; all are struggling. And while she may have been lucky to be last, Laren’s diagnosis didn’t feel lucky at all.
“It depressed me,” Laren said softly. “I really felt like, ‘Oh, well, that’s that.’”
Since that initial diagnosis, the disease has progressed, leading to problems with her legs and feet, increasing levels of neuropathy, low energy, and so on. She also has high blood pressure and struggles with depression.
For almost 10 years, with no health insurance and little social support, Laren managed her illnesses in a highly unproductive manner: she ignored them. There were occasional trips to the doctor or the ER, and on-again off-again attempts at insulin, but no routine of care and no real attempt to address underlying causes.
Then came the cataracts. “My vision got so bad I couldn’t see,” said Laren. “I couldn’t read my mail. How could I take medicine? I couldn’t even read the bottle. I couldn’t see faces.”
Laren’s despair deepened until she began to entertain thoughts of just ending things. At that point, about two years ago, she found herself in the psychiatric unit of Mt. Sinai Hospital on the south side of Chicago. Sinai treats a stream of patients facing similar challenges and is part of Chicago’s Medical Home Network (MHN), a broad alliance of clinics, hospitals, and other organizations that collaborate to improve care for the area’s underserved populations (see “A Closer Look at the Programs” at bottom of page for more information). Laren was assigned a case worker, Kim Reams, to help her get the care and support she needed.
Reams has been a case worker for two years, although she’s been employed by Sinai as a registered nurse for nearly 10 years. Reams, and other professionals like her throughout Chicago, participate in MHN both because it gives them an opportunity to build rewarding relationships with patients and because the organizations they work for have committed to working together wherever possible to control costs. In Reams’s role as a case worker, she’s responsible for about 70 patients. Some of these she sees almost daily, others far less frequently.
“I’m there when they need me,” said Reams. “But the goal is for them to not need me so I actually feel good when I can help people enough so that they don’t need to call — it means they’re on the right path.”
Laren says that some of the most invaluable support Reams provided wasn’t of a medical sort at all. Reams sat with Lauren and helped her fill out her Medicaid paperwork, something she’d been trying but unable to do for almost five years. As a result, she now has health coverage for the first time in recent memory. Reams also arranged transportation for Laren to and from various appointments, without which, Laren says, she simply wouldn’t have gone. And finally, she helped Lauren adjust to and follow her new insulin regimen, which involved self-administered injections four times a day.
But most importantly, Reams helped Laren get her sight back, scheduling cataract surgery in June on her right eye, and then in September on her left. Both surgeries were successful and Laren is taking advantage of her newfound freedom to move about on her own, regularly attending services and other functions at the New Covenant Baptist Church near her home.
“It’s nice to be able to go to church again,” she says. “You don’t really know what it means just to be able to see someone’s face.”
Laren describes her diabetes today as being “under control,” and she’s looking forward to a bright future.
Reams says she speaks to Laren only about once a month. “When I started working with the MHN effort, I was focused on meeting a set of performance targets. That’s still important, but now the satisfaction I get out of helping people is really what makes a difference to me.”
Abdi, 60, Minneapolis
The Importance of Adopting the Patient’s Vocabulary
In his native Somalia, Abdi was a wealthy man. He spoke several languages, traveled regularly, and was content. He had a good life.
But in the late 1980s, his country fell into a protracted civil war and famine and, like many of his countrymen, he eventually fled. Abdi came to the U.S. as a refugee in the early ’90s, initially settling in San Diego, where he remained for almost 20 years. More recently, he relocated to Minneapolis, home to a large Somali population.
Abdi was a frequent visitor to the Community-University Health Care Center’s (CUHCC; see “A Closer Look at the Programs” at bottom of page for more information) emergency room, seeking information or some sort of resolution for a range of different issues: pain, poor sleep, hearing loss. But his care was episodic and sought-for resolutions didn’t materialize. He missed follow-up appointments and instead came back to the emergency department again and again. At almost every visit he would tell providers, “My brain is gone. I have difficulty with memory, especially short-term memory. My long-term memory is fine. I am a good storyteller!” Abdi believed that his symptoms were caused by an evil spirit, an “evil eye,” and that his ex-wife was doing “voodoo” or had cursed him out of jealousy.
His providers quickly became concerned and referred him to CUHCC’s care coordination program to see whether they might be able to find a coordinator who could engage him in a more coherent care plan. He was paired with Nasteha Mohamed, who, fluent in Somali, was herself a refugee to the U.S., arriving many years ago at age eight. Mohamed has extensive experience as a care coordinator, working previously in a similar role within group homes, and within culturally specific child care settings. She has a B.A. in social work and is working toward her master’s degree.
The pairing turned out to be a natural fit. Mohamed makes a point of trying to understand every patient’s illnesses and challenges from their perspective, even going so far as to adopt a patient’s vocabulary to discuss and illness or a condition. “If a patient wants to talk about a bad spirit instead of referring to depression, then that’s how we talk about it,” she says. “That’s what depression is to them.” Mohamed and her fellow CUHCC care coordinators see value in incorporating spiritual, cultural, and religious ideas into a patient’s treatment plan.
Once Abdi began working with Mohamed, he embraced the idea of a formal treatment plan and started to make slow but steady progress. He had a CT scan which discovered vascular damage. He underwent neuropsychiatric testing and saw an ear, nose, and throat specialist. Later, after lack of sleep began to impair his day-to-day functioning, he began psychiatry services.
Abdi now has been engaged in medical, mental, and specialty health services for about six months and, according to Mohamed, “he doesn’t miss any more appointments.” This may in part be because, like many care coordinators, Mohamed makes a point of seeing to it that Abdi gets consistent reminders. She also sets up all his rides and even writes out instructions about what Abdi should expect at a given appointment.
The effort and attention are not lost on Abdi. “She helps me with collaboration, navigation, education, and communicating my needs to my provider and other clinics where I am referred. I couldn’t make it without [her] support. I like the appointment reminders, and helping me set up rides. She helps me recognize my symptoms. And helps me navigate these outside places.”
Mohamed believes that one of the most important factors in working with Abdi was understanding his illness from his perspective. Everyone has a narrative about what is happening in their body that is based on their own experiences. Abdi believes that the mind, body, and soul are one and his framework for mental health is synonymous with pain and voodoo. “I recognize his symptoms the way he explains them,” she says.
Abdi wants to continue working with Mohamed, saying “I don’t want to work with anyone else. What we’re working on next is a waiver so I can get more in-home services like a personal care attendant.” Mohamed recognizes that Abdi is socially isolated, and believes that adult day care would make a difference, too. “I am going to continue integrating religion and spirituality into his medical and psychiatry treatment plans.”
Tanya, Laren, Abdi, and millions of Americans like them face enormous health-related challenges, coping with the day-to-day reality of living with serious, overlapping chronic illnesses. And yet they face other challenges, too: getting from place to place; maintaining a stable living situation; learning to trust; and ensuring a next meal, clothing, and a sense of belonging. These needs are not subordinate to their medical issues and addressing them is critical to achieving desired outcomes. In the same way that medicine had to “learn” to treat patients’ medical and mental health issues with equal attention and vigor in the 1990s, perhaps today’s challenge is learning to treat patients’ nonmedical needs as well. Care coordinators just might help bridge that gap.
A Closer Look at the Programs
Medical Home Network — Chicago
The Medical Home Network (MHN) was established in 2011 in Chicago with the backing of area hospitals, clinics, the Illinois Medicaid program, and dozens of other entities, to increase communication and data-sharing within the metropolitan area’s highly fractured delivery system. The effort has led to marked improvements in the quality of care available to many of Chicago’s most underserved and vulnerable residents. Today, 22 hospitals and more than 200 medical home sites can share patient data and information through MHN’s online platform, leading to efficiencies that have helped slash readmission rates (15%), increase timely follow-up care (more than 100%), boost engagement among the target population, and nearly triple the rate of area patients who have a health risk assessment on file (79%). The backbone of the MHN program is a battery of care coordinators who take a hands-on approach to ensuring that patient care is coordinated and that no one falls through the cracks. These care coordinators, who are employed at participating clinics, receive extensive training on changing patient health habits, linking patients to available community resources, leveraging technology to improve health, and ensuring that all participating entities have access to up-to-date information about patients in the system.
Notable: Launched its own accountable care network in 2013.
Care Connections Program — Los Angeles
Seeking to save money and improve health care quality, in 2014 the Los Angeles County Department of Health Services launched an innovative program to find out if a small, dedicated group of community health workers could effectively engage and encourage high-need patients to take better care of themselves and to take advantage of available community resources. Wherever possible, the health workers were drawn from the communities they serve. Most had some background in health care or other community advocacy work. But even so, training was extensive (six weeks) and varied, covering everything from recognizing symptoms to medication management to discharge planning and anger management. Community health workers also received extensive training in available housing, legal, transportation, mental health, and other support services to help them better assist patients with corresponding needs. Community health workers are encouraged to build strong personal relationships with their clients and most spend at least part of each day in the field assisting clients or identifying new ones that may benefit from their support.
Staff: 50 community health workers
Patients engaged: About 1,500, or roughly 5 percent of the county’s high-need population
Community-University Health Care Center (CUHCC) is a federally qualified health center located in the Phillips neighborhood of Minneapolis, which is a melting pot of different cultures and ethnicities. No one racial group makes up more than a fifth of the patient population at CUHCC, and to serve this diverse community the center employs six full-time interpreters. CUHCC prides itself on being a one-stop shop for all its patients, offering primary medical, dental, and mental health services, as well as a pro bono legal clinic and domestic and sexual assault services. About 50 percent of all patient visits to CUHCC are related to mental health issues and staff have become adept not only at screening for depression and chemical health needs, but also at providing “the care between the care”: CUHCC staff’s way of referring to connecting patients and/or their families with programs and resources that can help meet their nonmedical needs. Much of this work falls to CUHCC’s care coordination staff.