Once patients leave the doctor’s office, their health outcomes largely depend on continued engagement in their own care, including appointment follow-up, treatment completion and self-care practices at home. This can be challenging, particularly for “high-need” patients — that is, patients who face socioeconomic challenges, have multiple chronic illnesses or otherwise grapple with other external factors that impede their access to health care.
Donna Zulman, MD, assistant professor of medicine at Stanford Medicine, hopes to transform care for these high-need patients by finding effective strategies that boost engagement in their own care. Achieving this goal may require specialized programs that provide extra time, resources and autonomy to patients, she said. Zulman also suggests individually tailored approaches may be critical to build trust and lasting relationships with high-need patients.
The effort hinges on a strong core of health care professionals who not only forge personal connections with patients, but who also help patients find ways of overcoming barriers to improving their health. One provider, for instance, found that a patient with heart failure didn’t have a car and likewise couldn’t take the bus or walk due to his condition, so the provider helped him obtain taxi vouchers.
Zulman and her colleagues worked with leaders and clinicians at 12 different intensive outpatient programs in Northern California, collecting information about the most common barriers to high-need patient engagement and the measures the leaders and clinicians devised to boost patient participation. A paper detailing the researchers’ work was published online Aug. 10 in the Journal of General Internal Medicine.
In a recent interview, science writer Hanae Armitage talked with Zulman about the paper’s findings.
1. What are some of the characteristics of a high-need patient?
Zulman: The term “high-need” refers to a group of patients who typically have complex medical, social or behavioral challenges and account for disproportionate health care spending ¾ sometimes described as the 5 percent of patients who account for 50 percent of health care spending in this country. This population includes patients with advanced illnesses or disabilities, older adults with frailty and patients with multiple chronic conditions.
2. What are the key barriers that prevent high-need patients from completing intensive outpatient programs?
Zulman: When we asked intensive outpatient program leaders and clinicians about barriers that impede patient engagement, the most common structural issue was care fragmentation across health systems. Many high-need patients receive care from multiple physicians, clinics and social services in different settings.
At an individual level, challenges like financial insecurity, mental illness and substance use, physical symptoms and limitations, and a lack of social support were extremely common. One thing that stood out was the prevalence of socio-behavioral factors that pose major challenges for patients, including distrust of the health care system, transportation challenges, housing instability and other issues relating to the neighborhood and social environment.
3. How should health care professionals rethink their approach to outpatient programs to boost participation?
Zulman: Most of the people we interviewed for our study described patient-engagement approaches in three general domains. First, they described strategies that facilitate patient communication and participation in recommended health-related activities. These often involved concrete resources, such as arranging for copay reductions or transportation vouchers, assisting with housing applications to help a patient identify a safer living situation and co-attending appointments to help coordinate care from different doctors. These strategies serve as communication lines and access bridges, helping patients overcome the physical barriers that impede the use of available services and resources.
A second set of strategies focused on building relationships and trust. Often, the programs begin by attempting to meet patients’ basic or most pressing needs, a process that may involve addressing housing instability, food insecurity, transportation challenges, employment status or social isolation before tackling health issues. Some patients have had negative experiences with the health care system, and building trust is central to longer-term engagement.
Finally, a third set of strategies focused on helping patients gain insight, set goals and problem-solve. Program representatives frequently described a process in which they initially problem-solved for patients, particularly when patients faced critical needs around housing, food insecurity and finances. Over time, they gradually introduce patients to skills and coping mechanisms so that they could begin to problem-solve for themselves. Through these methods, programs can help patients gain the skills needed to monitor and address their health issues, develop coping mechanisms and seek the care they need.
4. How can health systems design intensive outpatient programs that succeed in engaging high-need patients?
Zulman: We identified a number of program features that appear to facilitate high-need patient engagement and could inform the design of future programs. First, most teams included staff from diverse disciplines — such as a physician, nurse, social worker and psychologist — which increased the likelihood that someone on the team had the necessary expertise to address the patient’s needs. Including team members who had a shared experience with patients, whether that referred to roots in the same city, language concordance or a history of homelessness, was also described as helpful. Many programs also sought staff who are proactive, creative and flexible, all of which are a boon to engaging high-need patients, as it often involves unconventional activities that deviate from standard practice.
We heard all sorts of interesting stories about program staff who found time to visit patients in their homes, take them fishing, stand with them in line at the DMV and even go out in search of a prosthetic leg. These time-intensive and intimate activities were seen as pivotal moments that led to trusting relationships. So programs require adequate time and resources to build relationships with patients, and they need to have the autonomy to address patients’ needs on their own terms.
5. How do you scale these new models to a larger population?
Zulman: That will require substantial effort and creativity because the heart and soul of these programs is the passion and dedication of the core staff, and that’s not something that can be easily scaled. However, some programs are experimenting with creative approaches that employ health coaches, medics and members of the community to assist with patient-engagement efforts. There are now a number of multisite collaborative efforts to share effective practices and help train new teams. Program leaders and researchers are working hard to understand the key ingredients of successful programs, and to develop tools and resources that will help disseminate the most promising approaches.