Lisa Cooper is on a mission to help end health disparities worldwide, and while her vision is global, she’s also looking locally — to key people living within the communities that Johns Hopkins serves — to make this quest a reality.
Some of the front-line citizens Cooper has focused on, known as “community health workers,” are extraordinary people who live in the communities they serve and have a gift for helping their fellow citizens navigate what can often be a very difficult world — including, but not limited, to the health care system, she says.
“I’ve done a lot of work with community health workers and we have found them to be extremely effective, not only in helping patients navigate the health care system more effectively, but in addressing a lot of the issues we typically don’t address in health care,” says the Liberian-born Cooper, who is founder and director of the Johns Hopkins Center for Health Equity, director of the Johns Hopkins Urban Health Institute, as well as the Bloomberg Distinguished Professor of Equity in Health and Health Care.
“It’s almost impossible for people to do the things they need to do to stay healthy when they are concerned about having enough food to eat or whether or not their utilities are going to be shut off,” she says. “Community health workers help people navigate a lot of those situations, because they’ve often had their own experiences with such challenges.”
A giant in the field of health disparities research, Cooper recently published Why Are Health Disparities Everyone’s Problem? (JHU Press). A personal and professional memoir that details the evolution of her research, it argues that scientists, clinicians and community members must work together to not only immediately improve health outcomes in a community, but to provide public policy decision makers with evidence-based strategies for eliminating the injustices that plague our health care system and society.
Her foundational insight has always been that any researcher who is serious about improving health outcomes in racially and ethnically minoritized communities must work tirelessly to develop long-term, transparent, equal partnerships with leaders in those communities. She calls it “community-based participatory research” and she has devoted her career to cultivating partnerships with some of the most trusted residents and leaders in Baltimore City, many of whom make up her center’s Community Advisory Board and help determine its research priorities.
In her research (which earned her a MacArthur “genius grant” in 2007), Cooper has described what she calls “racial concordance,” the fact that minority patients are more likely to stick with and follow the advice of doctors who look like them because the communication in those relationships is better. Given the shortage of doctors, especially doctors from racial minority groups, and the increasing complexity of medical care, she sees community health workers playing a game-changing role in bridging that divide.
Over the past two decades, Cooper, and now a cadre of mentees, have helped pioneer research showing how effective community health workers can be, especially with proper support, in improving health outcomes among racially minoritized communities.
Born to Serve
When Tiffany Scott first heard someone describe the duties of a community health worker — at an interview for a job she didn’t even think she wanted — something just clicked. “I thought, ‘This is what I do every day,’” she says.
Scott grew up in Baltimore City, and like her mother and grandparents before her, she delights in helping anyone who needs it. “My grandmother was an untitled community health worker,” she says. “She had the front door unlocked all the time. People would just open the door and say, ‘Hey, Ms. Johnson,’ and walk right in. My grandfather would take people to job interviews, the grocery store, doctor’s appointments. People could even borrow money. There was always a hot plate of food at the Johnsons’ house for those who needed food for their soul.
“We were all raised to share what we have,” Scott says. “If you have a loaf of bread, you cut it in half and hand the other half to someone who needs it. I had no idea that there was a name for what we’ve done all of our lives.”
As a community health worker, Scott has helped figure out why clients aren’t always taking their medication or showing up for medical appointments. A lot of times they just didn’t understand the medical jargon, but were too polite or embarrassed to advocate for themselves, she says. Or they might need to refrigerate a prescribed medication, but their electricity had been interrupted due to nonpayment. Or they couldn’t afford the copay or transportation costs. Or they had mental health issues that needed to be addressed.
“We find the root of the issue and work from the root up,” she says.
Scott can’t remember exactly when she met Johns Hopkins’ Chidinma Ibe, who is an associate director and researcher at the Center for Health Equity, and one of Cooper’s mentees. But Scott remembers attending a conference and hearing Ibe speak. There was something unusual about the Hopkins professor, Scott says, and she was immediately drawn to her. But it was several years before they would meet again. In the meantime, Scott went out on her own and became a consultant — giving motivational speeches, training aspiring CHWs and advocating for more support for the profession.
When they finally reconnected and started working together, Scott realized what had drawn her to Ibe at that first brief meeting. “This woman has something that can pour into me and make me better,” she says. “Sometimes, when you are teaching all the time, you want to be taught.”
Now close colleagues, Ibe and Scott have collaborated on a number of projects, including a report Ibe recently led for Baltimore’s Abell Foundation, Advancing and Sustaining the Community Health Worker Workforce in Baltimore City, in which she calls for more sustainable funding for CHWs, including Medicaid reimbursement for their work.
“I think we sometimes view community health workers as this magical fix and we don’t take into account the fact that a lot of them are struggling with some of the same issues they’re helping their patients navigate,” Ibe says. “Job insecurity is a major hurdle for community health workers because most CHW jobs are funded through grants, making them inherently unstable.
“CHWs are also underpaid,” she says. “Some have issues with food insecurity. Some are living in neighborhoods that have been affected by violence. Some have family members who have been incarcerated, or they themselves have had experiences of incarceration or substance abuse. And when we don’t account for these realities, we’re not giving CHWs the support they need to excel in their roles and are essentially setting them up for failure,” says Ibe.
Scott says another roadblock many CHWs face is that employers don’t always understand or value what they do.
“Often, they don’t understand our scope of practice,” says Scott, who helped design Maryland’s CHW certification program, and also helped organize, and now chairs, the Maryland CHW Association Inc.
“I’ve seen people hire community health workers and then assign them to work as receptionists. It’s not that we don’t have the skills to be receptionists or that there’s anything wrong with being a receptionist,” she says. “But not effectively utilizing a CHW diminishes the profession. I am always looking for the glass ceiling to break, and it’s really a matter of educating upper management and the medical profession about what we can do if given the opportunity.”
Ibe says Tiffany Scott is “just exceptional.”
“One of the many important things I’ve learned from her,” says Ibe, “is that a lot of people who are successful community health workers have always been successful community health workers in the sense that they’re always the ones people turn to. Their lived experiences, even though they can make their own situations precarious, are what give them the capacity to really help other people.”
Palliative Care Paradox
Ibe has been fascinated by community health workers since she was an undergraduate at the University of Pennsylvania.
“I am a first-generation American and my parents are from Nigeria, which is a very communal society, so I am very much interested in how members of communities support one another and the implications for health,” she says. “And I am entranced by laypeople who are really good at navigating their own social circumstances.”
For her doctoral dissertation at the Bloomberg School of Public Health, Ibe analyzed the data her mentor, Cooper, had collected in a study designed to coach both doctors, and their minority patients with hypertension, to develop a more engaged and collaborative communication style. Ibe found that, thanks to coaching by community health workers, patients became more assertive during doctors’ visits, and both patient/doctor communication and the patients’ blood pressure improved, even in cases where the doctors didn’t take steps to improve their own communication skills.
Recently, Cooper introduced Ibe to another Johns Hopkins mentee, cancer surgeon Fabian Johnston, and they are collaborating on research into whether community health workers would be willing and able to introduce African American patients with advanced cancer to the concept of palliative care and help connect patients to palliative care services.
Ibe notes that palliative medicine, at its best, is about listening to patients with serious illnesses and addressing their needs and wishes. It is a medical specialty that treats the whole patient, managing pain and other symptoms, including anxiety and depression. And it is now recommended for patients with challenging illnesses as soon as they are diagnosed.
“Community health workers are exceptionally well suited to support patients in accessing palliative care because there’s an intrinsic patient centeredness in palliative care that you don’t always see in other forms of medical care, and that’s what CHWs are all about,” Ibe says.
Johnston has long been a passionate advocate of palliative medicine. He works closely with the Hopkins Palliative Medicine Program, and has taken a course at Harvard to incorporate it into the way he treats his surgical patients.
Palliative care is underutilized among all patients, he says, but especially among African Americans. “A striking paradox is that minorities get less care throughout their lives, and then at the very end, they may get more care but it is often inconsistent with their wishes. So even at the end of your life no one is listening to you,” he says.
Johnston describes it as “one of those ‘Aha!’ moments” when he first heard about the landmark 2010 palliative care study by Harvard’s Jennifer Temel showing that palliative care could both prolong and improve the quality of life in advanced cancer patients. He decided to shift from his research in pancreatic tumor immunology and instead pursue a master’s in health science at the Bloomberg School of Public Health. He realized he was less interested in developing new cancer therapies than in figuring out how to improve access to the best existing therapies for his African American and other underrepresented minority patients.
“Black people are far more likely to die in pain because, as has been well established, they are less likely to be prescribed pain medication, either because of a bias that they may be drug seeking or because of a bias that Black people experience less pain,” Johnston says. “I knew if I wanted to make a real impact I wasn’t going to be doing it sitting at a bench.”
Johnston’s research is in its early stages, beginning with in-depth interviews and focus groups to gauge whether community health workers can and will promote early use of palliative care among African American cancer patients and their families in a “culturally sensitive manner.” But his dream is that, with the help of CHW navigators, his most vulnerable patients will all receive care consistent with their wishes, and the most effective possible treatment for their symptoms, including pain.
Ultimately, what Cooper and her mentees want to do is to change health and social policy to improve the lives of people across the country and around the world. They are working every day to add to the growing body of evidence for practices that can be translated into sweeping policy changes — from raising the minimum wage and providing safe water and secure housing to enacting police reform — that address the underlying causes of health disparities.
“It’s not that health care providers wake up saying, ‘I’m going to hurt somebody today,’” Johnston says. “The disparities are baked into our systems, so our systems are what we need to change. So, when we do this kind of research, we are always thinking about the policy implications.
“Racism led to policy decisions, which led to disparities. So, let’s change the policies, because we’re not going to necessarily change or get everyone to acknowledge their implicit biases. But we can at least make structural changes, like incorporating community health workers into our health care teams if it proves efficacious, to allow folks better care.”