By, Carolyn Jenkins, DrPH, APRN-BC-ADM, RD, LD, FAAN, Professor and Ann Darlington Edwards Endowed Chair, Director, SCTR Community Engagement Core, Medical University of South Carolina
Nearly 20 years ago, the Medical University of South Carolina was charged by the state legislature to investigate diabetes and ascertain the related problems and challenges.
Not surprisingly, we found that diabetes cases were rising and disproportionately affecting underserved and minority populations. In addition, we quickly realized that the number of diabetes-related amputations far exceeded what we thought would be occurring.
The result of that initial work was a study focused on addressing the prevalence of diabetes by improving professional education of providers, fostering better community relations and increasing surveillance and data.
I inherited the community piece and it quickly became my lifelong work. A year or two after we started to address diabetes at the community level by creating a coalition, the Centers for Disease Control and Prevention (CDC) began collecting proposals for the Racial and Ethnic Approaches to Community Health (REACH) grants. Suddenly, my work, which was largely without dedicated funding, had the opportunity to receive additional resources to specifically focus on reducing the disparities faced by Blacks at risk for or living with diabetes.
So, the University applied for the grant on behalf of the Diabetes Initiative of South Carolina, with a deep focus in Charleston and Georgetown Counties. Georgetown was actually a late addition to the proposal, as they didn’t announce their intention until about 24 hours before the grant was due. However, in short order, we received 50 letters of support.
This was one of the first indications that there was great interest in addressing diabetes at the community level. In fact, when we started the work, community groups kept coming and saying diabetes was a huge problem in their community, but they didn’t have the resources or expertise to design a successful grant to CDC.
For there to be good work, you have to have a good plan. Early on, I made the administrative decision that the University wasn’t going to go into communities and say “look at these statistics, they’re just terrible.” Instead, we asked the communities what challenges they faced in relation to diabetes and what they wanted to do about it and then identified what we could do together. I didn’t want to start with the University as a driver of community-based solutions.
This approach didn’t exactly allow us to hit the ground running. However, after several months of community members asking me what the University was going to do and my answer being “we’re going to do whatever you think will solve the problem,” they finally got the picture. It was as if the light bulb turned on and everyone realized this wasn’t going to be the typical University grant exercise, wherein the University comes in, experiments with communities and disappears when the money goes away. It was important to show that the University was in this for the long haul and we were building a true academic-community partnership.
From then on, community organizations began providing ideas for how to address diabetes. And, what’s even better, the issues they identified were the same as what the epidemiological data indicated – this was very empowering for the community.
Together, we looked at diabetes and all the negative health outcomes as well as the community assets to figure out what to focus on in the three to five years we had to document outcomes. Everyone, from local podiatrists to the traditional health system to the community, told us that people with diabetes had two great fears: losing their legs and having to go on “the kidney machine” (dialysis). But, ultimately, they decided that their legs were most important.
Unfortunately, amputations were a big problem at that time, as patients were showing up to hospitals and primary care providers with extensive sores and even gangrene. It appeared that a lot of the problems were in the health system and in the way the health system was dealing with the people in the community.
At first, the healthcare providers were a bit resistant as they saw the problem as belonging to the patient who often “did not take care of their diabetes.” However, I and the University helped the community recognize that providers and their patients needed support and weren’t to blame.
When we started saying “the problem belongs to all of us,” the entire continuum of care could come together. For instance, a certified medical assistant can look at someone’s feet and check whether someone is in danger of losing a leg. So, we taught anyone who would listen how to conduct foot exams. We even developed a foot care course for nurses.
Eventually, the community bonds were so tight that podiatrists made an agreement with community health workers that if a patient couldn’t afford care and the community health worker called the podiatrist, they would see the patient for just a $5 co-pay and, if there was a lesion, they would see the person for free if the person had no money or insurance.
We also built basic principles for working together as a coalition that involved listening to each other and the community, clearly putting health issues on the table and being open minded about the issue. Slowly, community, patient, doctor, nurse, and pharmacist learned to speak the same language.
It was also important for community health workers to educate patients on how to communicate with providers by encouraging patients to ask doctors and nurses “what the numbers mean.” We responded to provider concerns about how they would get paid to provide the quality of diabetes care we were seeking, and worked with the state legislature to establish insurance coverage for diabetes education and supplies. We also responded to concerns about the multiple standards for diabetes care, and synthesized all the diabetes guidelines into a two-page document. We’ve incorporated these guidelines into the health professions curriculum and continuing education programs.
As a result, we’ve made significant progress in improving the delivery of diabetes care, including lower A1Cs and blood pressure in people with diabetes and we’ve narrowed the gap between the amputation rates for Blacks and whites in Georgetown and Charleston Counties. Community-wide, our statistics are looking better and we estimate that we save between $1.6 to $2 million a year in prevented amputations.
With this academic-community-provider partnership forged, we began to look at health systems quality improvement teams around community health workers, which we call community health advocates. We trained and employed the advocates to help patients navigate the health system and coordinate a continuum of care. At the same time, the advocates trained us how to work more effectively with the community.
The advocates went into the community and learned what was and wasn’t happening to improve health. Initially, they found that men were not showing up for treatment. To address this, they created numerous community-based solutions. One example was an all-male play that was a take-off of Steel Magnolias. In essence, it was a womanless wedding, during which they served diabetes-appropriate food, one actor had to have an amputation and others acted out the dangers of not monitoring blood sugar levels.
In short order, the advocates had built trust between the traditional health systems and patients, who had little to no interaction previously. To expand their work, before there were electronic health records, the partners worked together to build a diabetes registry to identify which patients had come into health centers and were in danger of developing diabetes or not controlling their condition. They helped patients navigate the center and traditional healthcare and offered education programs on how to control diabetes to patients, families, and friends in the community, at churches, beauty parlors and other community gathering places. In addition, they provided referrals to Federally Qualified Health Centers (FQHCs) to increase access to primary care and connected patients with social services to link them with the resources needed to manage diabetes and avoid amputations and hospitalizations.
While this was happening, the traditional health system moved more and more into the community. As one health provider worked in the community, he became an advocate to his colleagues and, often, providers were “hooked” on doing more community work than they had originally intended.
In short, community ownership made all the difference. The University, instead of being a traditional academic institute at arm’s length, served the necessary role of the catalyst for change. The University team being out there in the community was vital to success: every time we hit a snag, someone had to be positive and get the right community leaders to look at the problem and see what the community could do about it.
For any health intervention to work, the emphasis needs to be on a broad based ownership of health. There is no one or two groups that can truly and fully benefit and improve a community’s health. While there will be one or two groups that lead, they must bring in the entire community support structure, including nontraditional support from outside the health world (schools, sororities/fraternities, churches, clubs, business, foundations, and others).
For more information on the Georgetown and Charleston County REACH Coalition, see: