Eastern Kentucky, with its small communities nestled in the Appalachian Mountains, is well known as one of the poorest pockets of the country. What’s sometimes forgotten, though, is how the region’s economic decline has gone hand-in-hand with a long history of poor health.
In the early 1990s, state policymakers began to grapple with what to do about the region’s high rates of cancer, diabetes and heart disease, as well as the apparent lack of such basic good health practices as preventive screenings. In many ways, the people in the region seemed to be living outside the health-care system. That’s why, in 1994, lawmakers and health officials raised a simple question: How do we get people into the system in the first place?
“We knew we needed to create a position that would work as a patient advocate,” says Fran Feltner, director of the Center of Excellence in Rural Health at the University of Kentucky. At the time, “lawmakers sort of joked that if there was money left after the legislative session, they would create a program that would include an advocacy position,” she says. “Surprisingly, there was money left, so the Kentucky Homeplace was born.”
Kentucky may have backed into the program, but Homeplace has become an innovative model for serving people in poor, rural areas. At its heart is the advocacy position. Those who enroll in the program are matched with a community health worker -- usually someone born and raised in the community. The health worker can assist with any number of things that might affect a person’s well-being, from getting them eyeglasses to helping them with food assistance to making sure they make medical appointments. “Those may seem like small problems for many people,” says Deana George, a community health worker with Kentucky Homeplace, “but I know I’ve made the process that much easier for our clients.”
After just a year with the program, George has several positive stories to share. She notes one proud moment of getting free cancer medication for a client -- a medication that can run up to $10,000 a month. “When I bump into [clients] at the grocery store and they introduce me to their family, I know I’ve made a difference,” she says.
Not only has the program helped get people into care, it has also seen improvements in diabetes outcomes and in cancer screening rates. Nearly 80 percent of participants receive colon cancer screenings, well above the 40 percent national average. The program, which now serves 36 counties in Kentucky’s Appalachia region, has also introduced a new low-dose screening for lung cancer.
Health policymakers outside Kentucky have taken note. Homeplace, which is run through the Center of Excellence in Rural Health, was recognized as an “outstanding rural health program” by the National Rural Health Association, and the U.S. Department of Health and Human Services applauded its work in colon cancer screening rates. Feltner, who oversees the program, has won numerous health awards throughout the state and region. As she sees it, the community health worker is the key to the program’s success. “We’ve discovered the missing link, and that’s a person on a health-care team that makes sure a client has what they need outside of the clinic,” she says. “If a mom doesn’t have shoes for her kids, she’s likely not getting a regular Pap smear.”
Kentucky’s community health worker concept is spreading to other states and regions where, under a variety of names and titles, it has been making a difference in the health -- and possibly the health costs -- of poor, underserved communities. Under the Affordable Care Act (ACA), the idea of community health workers who can advise and assist patients about health-related services has been given new life as well.
"We've discovered the missing link, and that's a person on a health-care team that makes sure a client has what they need outside of the clinic," says Fran Feltner, who oversees Kentucky Homeplace. (James Morris)
The concept of a community health worker program goes back to at least the 1800s in Russia, according to a study in The New England Journal of Medicine. In the 20th century, such programs began surfacing in a number of countries. By 1975, the World Health Organization described community health workers as “a key to health care’s success.”
“Community health worker” has come to be an umbrella term that encompasses many different job titles, such as patient navigator, peer health educator and patient advocate. Whatever the title, the goal is simple: to help patients find and use resources to make health care and other supportive systems work to their advantage. “It can be very challenging figuring out our health-care system, especially if you’re new to this country,” says Megha Shah, a practicing physician at Emory University who has extensively studied community health workers. During the residency phase of
Shah’s training as a physician, she worked on a community engagement project and was struck by the efficacy of the idea. “It hit me that maybe, as a physician, I’m not the best person to provide [my patients] with [the nonmedical] information they need,” she says. “There could be other people who share a language and a culture who can better communicate with a patient.”
Usually employed either by a health clinic or community-based organization, community health workers help patients with barriers that keep them from living a healthy life -- the problems that a doctor can’t do much about once a patient leaves their office. “A clinician will never understand why someone’s nutrition is so bad until they go to their home and see for themselves,” Feltner says. “That’s what a community health worker can do.”
The concept plays into one of the overarching goals of the ACA: to find new ways to address people’s health-care needs. Since its passage in 2010, several states have undertaken transformation plans for their health systems -- and community health workers are often a part of that model. This is especially the case in states looking to make investments that focus on the social factors that impact health. “More and more are starting to take a look at the role of community health workers,” says Amy Clary, a policy associate with the National Academy for State Health Policy. “It’s one tool in the toolbox that connects folks to the health-care system.”
Eastern Kentucky's lagging economy and history of poor health has made the community health model more vital. (AP)
A 2014 study from the American Medical Association found that a community health worker improved the likelihood that patients would obtain proper outpatient care and that they would not have to be readmitted to a hospital within 30 days of discharge. The study also found that patients were more likely to report whether they experienced improvements in their mental health. Some of those gains have been seen in Minnesota, which revamped its health-care system in 2010. The state decided to pursue a health-care home model. Health-care homes are coordinated care clinics with providers of all types under one roof -- meaning a person can get all of their health needs met in one visit. Providers are often paid a fixed monthly fee, with bonuses for meeting health goals.
When the state first adopted the health-care home model, it only had resources for four community health workers. That number has since ballooned to more than 30 as the state continues to see positive outcomes from their work, according to Kristen Godfrey-Walters, community care coordination manager at Hennepin County Medical Center in Minneapolis. For example, a 2015 analysis of patients enrolled in a health-care home and working with a community health worker found there was a 29 percent reduction of patients being admitted to hospitals and a 21 percent reduction in emergency room visits. “I really see community health workers becoming a traditional role on a health team, right along with the provider,” Godfrey-Walters says. She adds that the medical center doesn’t have the ratio of community health workers to providers that it would like and, as she puts it, “the role right now isn’t seen as a regular member of every health-care team. [But the system] is starting to move in that direction.”
Massachusetts is currently revamping its Medicaid program from fee-for-service to bundled payments. As that process has begun, it’s been increasingly common to see community health workers as part of the health-care system. Lisette Blondet, director of the Massachusetts Association for Community Health Workers, reports that there are now 3,000 community health workers throughout the state. Blondet helped found the Community Health Education Center, which trains community health workers in the Boston area. She has seen a change in attitudes toward community health workers over time. “In 1993, the Centers for Disease Control wasn’t doing anything in the way of promoting community health workers,” she says, “but there’s been a huge change of interest thanks to the ACA. Massachusetts, which is undergoing a major revamp of its Medicaid program, can really use them to address issues and reach people where doctors cannot.”
Massachusetts is one of 15 states and the District of Columbia that have a state-level training process or provision to promote community health workers. That number is likely to rise as more states invest in programs that focus on the social determinants of health. However, one state’s approach to developing and utilizing community health workers is not necessarily a model for another. “There needs to be flexibility when it comes to training and certifying people, since different states will focus on different communities,” says Clary of the National Academy for State Health Policy. She adds that state officials should also be thinking about how to make it easier for people to become community health workers.
Without community health workers, many lower-income residents would never see a medical professional at all. (David Stephenson)
While research shows community health workers help people navigate the health-care system and manage their health, no one knows whether they are cost-effective. “We continue to pitch community health workers as this tool that’ll make health-care cost go down,” Emory’s Shah says. “But we just don’t have the data to back that up.”
Getting that data could take a while: Population health outcomes move slowly. “The return on investment just takes longer than concrete clinical interventions,” Clary says. “The evidence for the business case is there, but the investment can take a long time to bear fruit.” Inevitably, she adds, sustaining the concept financially depends on executive leadership and buy-in within each state.
Until hard data is available, the push for community health workers will likely continue to be an uphill battle. For one thing, the lack of data impacts the salaries for community health workers. Their median salary is currently just under $35,000, well below a typical salary for someone in the health sciences field. “If we cannot give them better salaries, we’re doomed,” Massachusetts’ Blondet says.
There is also the question of who will pay those salaries. Even in Minnesota, with its pioneering health-care home model, it’s been tough to make payment work. Right now, community health workers are supported through a combination of grants, operational dollars and reimbursement. “Newer roles in health care are seen as needing to support themselves,” says Godfrey-Walters. “So we continually have that struggle to pull those pieces together.”
Lack of data and funding aren’t the only obstacles. Finding the right people for the job -- someone who’s already a member of the community being served, as well as a natural-born helper -- can be difficult. “Instead of being personality-based, many programs just rely on training,” says Shreya Kangovi, executive director of the Penn Center for Community Health Workers. “But you can’t train empathy and listening skills, so there’s often very high turnover.”
Kangovi should know. She led a 2015 study whose results appeared in The New England Journal of Medicine. The study found that a rash of programs in the 1980s were terminated because they failed to meet expectations. Her team researched what makes a good community health program and what doesn’t. One problem she identified: Programs that target a single disease are not a good use of funds or resources. “Who do you know with just one disease?” Kangovi says. “Clinicians are better trained to deal with health conditions. Community health workers are best when they’re structured around social supports. But programs fail when they aren’t tapped into the medical system at all.”
There’s a solution to this issue, says Kangovi. She points to community health workers at the University of Pennsylvania who come to the medical clinic once or twice a week to talk with walk-in patients, check up on their regular clients and help the clinical staff with miscellaneous tasks. That one day a week in a clinical setting makes a big difference in their experience and knowledge, she says.
Overall, the concept must strike a delicate balance of being medical without becoming overmedicalized; of being supported by the state but given flexibility with programming; of working outside the medical system but still being reimbursable by it. All of those tensions make it hard to get the community health worker model right. And of course the looming unknowns about how President Trump and congressional Republicans will dismantle the ACA adds uncertainty to the future of many of these efforts.
When fully actualized, however, community health workers can make other parts of the health-care system move more efficiently. They can help work in clinics as well as in community settings, and they have the potential to free up other members of a care team, taking on tasks that often slow down a nurse or a physician assistant. To be sure, community health workers aren’t the silver bullet to bring health-care costs down or eliminate health disparities. Even Homeplace has not overcome some of those challenges. In a New York Times report in 2014, Clay County, one of the Eastern Kentucky counties Homeplace serves, was found to have a life expectancy for its residents that was six years shorter than the national average; nearly half the population was obese.
Despite the daunting and complex health conditions, advocates say community health workers bring a long-missing piece to health care: someone who’s just there to help. These workers may not be able to address entrenched problems within the health-care system. But what the community health worker can do -- and has done in Eastern Kentucky -- is help patients find transportation to doctors’ appointments, connect them with child care services, make sure their family has food, and a host of other hard-to-navigate tasks. “In 20 years, we’ve perfected our own system,” Feltner says. “Now it’s picking up steam everywhere.”