Beyond Insulin: Community Health Workers’ Role in Diabetes Complex Care Management
My first interaction with Wanda Johnson and Nikki Merritt occurred in a diabetes care-coordination committee meeting during my first week as a Global Health Corps fellow. The committee is comprised of members representing local hospitals, behavioral health substance use disorder treatment organizations, and a team of community health workers (CHWs) who manage individual cases of diabetic patients. I was impressed by the group’s positive energy and the dedicated way in which they meticulously discussed each diabetes patient’s case: the progress they made in achieving their health goals, identifying their needs pertaining to housing, food, or medication, their recent experience at the hospital, and any new enrollees into the diabetes care program.
Both Nikki and Wanda are part of the Greater Newark Healthcare Coalition’s Healthy Greater Newark Accountable Care Organization, where they serve as a community health worker and a care team facilitator, respectively, for the population health clinical arm of the larger coalition. Since they joined the organization in April 2018, they have invested immense effort and time in recruiting underserved patients with chronic diabetes while providing them with the support to prioritize and independently manage their health. I recently caught up with them to learn more about their jobs, their motivation, and their self care plans.
The Diabetes Program at the Greater Newark Healthcare Coalition
The diabetes program enrolls patients on preset criteria: adult, Medicaid beneficiaries, residents of Newark, New Jersey, who have diabetes and co-morbid behavioral health and substance use disorder issues.
Diabetes is a condition in which the body is unable to produce sufficient or any insulin, resulting in elevated blood glucose levels. Since diabetes is an incurable disease, diabetic patients have to regularly monitor their blood sugar and maintain a healthy lifestyle through adequate diet and exercise. Because of a lack of financial means to obtain insulin and consume a healthy diet, many patients are unable to manage their diabetes effectively.
Who is a complex patient?
The word ‘patient’ refers to a sick person, but it also means the graceful acceptance of pain and suffering without annoyance over a certain period of time. Diabetes is one such ailment that demands lifelong patience and requires daily management of medication and healthy behavior.
A complex patient, Wanda explained, faces multiple health ailments simultaneously. Nikki added that their patients also face other non-medical issues because the social determinants of health are stacked against them, exacerbating adverse health consequences. Some patients are unemployed, elderly, living in food desert, suffering from mental distress, and/or dealing with adverse childhood experiences, a history of incarceration, exposure to violence, or housing insecurity. While coping with such external factors, many patients do not have the time or the resources to prioritize their personal health, let alone manage their diabetes.
What is the burden of diabetes?
According to the World Health Organization (WHO), since 1980, an estimated 422 million people around the world are living with diabetes. The U.S. ranks third globally for diabetes burden, with 30.3 million people — roughly 9.4 percent of the population — living with the life-long disease. In the U.S., about 95 percent of adults are diagnosed with Type-2 diabetes. The cost of diabetes in the U.S. increased by 26 percent since 2012. According to a study by the American Diabetes Association, in 2017, $237 billion accounted for the direct medical cost in diabetes, where about 30 percent of the expenditure was for hospital-based care and another 30 percent for medication.
Given the increasing incidence of diabetes and its associated demand for monetary and human resources, CHWs’ role is more pertinent than ever. Greater Newark Healthcare Coalition assists patients in determining the best course of action to stay on track with their diabetes care and thus, reduce their avoidable hospital visits.
What roles do CHWs play in the complex care management model?
A complex care model caters to patients with multiple health and social needs. It is a data-driven model characterized by patient-centeredness and a cross-sector team of medical and non-medical personnel. Working with patients is not just about treating their symptoms and disease, but also helping them tackle other social determinants of health that are confounding factors for their worsening mental and physical health.
A large part of healthcare occurs beyond the brick and mortar of medical facilities. CHWs fill the gap of care provision beyond the hospital by listening to individuals, understanding their concerns, and helping them best navigate available resources to improve their health within their unique contexts. In a complex care management model, a patient is at the center of care: “We tell them [our patients] that we are here for you and are all ears,” explained Nikki. The offer to just listen to someone can build trust, strengthen relationships, and allow patients to openly discuss factors that affect their health. For each patient, the CHWs develop a personalized plan to help them better manage their health and achieve set goals such as weight loss, regular check-ups, and consumption of a healthy diet.
Recalling their very first patient interactions, Wanda and Nikki said that they had to make themselves vulnerable. At the hospital, patients are often considered as cases to be treated, with little time and effort spent on understanding their contexts. When CHWs engage patients in a hospital setting or at their homes, they often strive to be fully present, emotionally and mentally, and understand patients’ health challenges from a holistic perspective.
What fuels CHWs’ passion for the work they do for their patients?
Nikki, a New Jersey native, developed a passion for health by advocating for sex education at her high school. She later interned at the Center for Medicaid and Medicare, worked at a nursing home with the elderly, and served in early childhood education with vulnerable groups such as minority and immigrant parents. Nikki grew comfortable with providing patient-facing services, which according to her, is an emotionally and physically demanding job that is also very rewarding as it helps people make better choices to live healthier lives.
“You definitely need to be passionate about direct service in healthcare in order to do this job.” - Nikki Merritt
“Healthcare chose me,” says Wanda, who has been associated with the health field since 1992 when she started working with a healthcare insurance company in New York. Wanda says that her experience is extensive, as her career spans various sectors — from Managed Long Term Care Coordinator (MLTC), Member Service Representative (MSR), Care Coordinator at the Department of Child Protection and Permanency (DCP&P) program within a health insurance company, Division of Developmentally Disability (DDD) within the Managed Care Organization (MCO), and Medical Claims Processor. It’s clear that Wanda is adept at assisting diverse populations and medical professionals. Twenty-six years of exposure to the healthcare industry and the medical insurance world have allowed Wanda to master an understanding of the medical and hospital insurance claims processing, member services, and the associated complicated documentation processes. Over the years, she has assisted clients in understanding and navigating their health insurance policies as well as trained new company employees.
The transition from a health management organization to a managed care organization opened a new window of perspective for Wanda. She says that her experience is now assisting her with honing her skills as a care team facilitator and working vis-a-vis with patients in the community, focused on the complexity of the healthcare system and navigating the barriers that patients often face because of lack of knowledge and access to resources.
How effective is the complex care management model?
The CHW model is a bottom-up approach to improve community health and provide guidance to at-risk individuals. The model’s ultimate goal is to reduce unnecessary hospital visits and ease the burden on financial and human resources in healthcare. Many patients get close to the CHWs that manage their case and often consider them an extension of family or even lifesavers.
Wanda explained that patients can be enrolled in the diabetes management program for up to six months, but some stay longer if they are still unable to get the desired level of independence in managing their health condition. Both Nikki and Wanda see their patients in person at least once a week or on an as-needed basis. Both state that they are always available by phone, too. They assist in filling patient knowledge gaps about diabetes and its implications on their health, as well as about social welfare resources related to housing, food, and medication in the vicinity. They also support patients to complete arduous applications for available social benefits, as well as connect them to organizations to manage their behavioral health and substance use issues.
Wanda’s face lit up as she shared the success of her patients. A few days ago, she encountered one of her patients in the community and he told her that he had not smoked any cigarettes the day prior. This was a huge achievement for someone who smoked half a pack per day. Some of them, she added, independently schedule a primary care physician’s appointment, which is another indication of success in enabling patients to take ownership of their health.
Self-Care for the Caregivers
Dealing with complex patients can be enervating. It is inevitable that the issues and emotions facing patients impact CHWs, and it is important to consider how caregivers can take care of themselves. Wanda says that in her role, the first subject she discusses with her team is self-care. Nikki sometimes sits in her car and screams to let it all out. Wanda also shares that she attends church weekly, prays, and has an enormous, grounding support system — from close friends and family to her relationship with God. Both Nikki and Wanda believe that their faith in God keeps them strong and provides them the energy to serve their patients.
Wanda asserts that, because the population they serve is known to have shorter lifespans, her vision for this program is to witness their patients heal and maintain healthy behaviors that will promote longevity. She says that the main goal of this program is to support patients and lead them to a state of independence, security, and optimism for their future.
Wanda ended the conversation on a quote by Kimberly Jones‐Pothier:
“The wound is probably not your fault, but the healing is your responsibility. You and God got this.”
Naina Qayyum is a 2018–2019 Global Health Corps (GHC) fellow at the Greater Newark Healthcare Coalition in the U.S.
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