As the University of Florida and Shands move forward together under the new name UF Health, The POST highlights exactly what UF Health is and all the ways our academic health center benefits our patients and the community around us.
By April Frawley Birdwell
In April, Sherry Behning made the hour-and-a-half long trip from her home in Orange Park to Gainesville for what she assumed would be a routine checkup. For 52-year-old Behning, who was born with Turner Syndrome and an accompanying congenital heart defect, “routine” meant a heart catheterization, a procedure she has had about 10 times throughout her life to monitor her heart’s faulty valves.
However, routine quickly turned into serious when the catheterization revealed the beginnings of an aortic dissection, a tear in the aorta that can quickly turn deadly if not caught and treated before it ruptures. Patients with Turner Syndrome, a genetic disease that occurs when a woman is born with a missing or incomplete X chromosome, are particularly susceptible to aortic dissection.
Luckily for Behning, she had come to UF Health, home to one of the only centers for the treatment of Turner Syndrome in the Southeast and a Congenital Heart Center with cardiologists and a surgeon who knew how to handle her complicated condition. Because she’d had other open-heart surgeries to repair her heart valves, her surgeon, Mark Bleiweis, M.D., implanted a tube graft — developed by a UF scientist — to fix the dissection.
“If I had not gone to Gainesville, I am not sure I would still be here,” says Behning, who finally went home in early June. “They are that good. They are that persistent in paying attention to symptoms and noticing things. It is the fact that they work together. They are a team, and they have conferences where they discuss cases. I think that when you have people as renowned as these folks to be able to put aside their egos and, as a group, come to a conclusion, it’s amazing. Not all physicians are willing to do that.”
Led by pediatric endocrinologist Elizabeth Fudge, M.D., and Congenital Heart Center cardiologists Jennifer Co-Vu, M.D., and Arwa Saidi, M.D., the Turner Syndrome Center of Excellence was established six months ago. It’s the type of program only possible at an academic health center like UF Health, combining the expertise of numerous specialists into one center and allowing patients to meet with all of their doctors during one visit. Eventually, they also hope to include nutritionists and psychologists as part of the team.
“Turner Syndrome is a disease with many organ systems affected: the most common are short stature, ovarian failure and heart abnormalities,” Co-Vu says. “We have consolidated everything so we can provide all of their services in one clinic visit. This also allows us to immediately collaborate and put our heads together if we find problems.”
Finding specialists who understand Turner Syndrome is critical for patients like Behning — although more is known about the disease today than it was when she was born. At the time, doctors told her parents that she would never live to be 20. Even when she was a college student, Behning remembers being in a genetics class where the professor told his students that patients with Turner Syndrome were profoundly mentally challenged. Behning later sent him a copy of her diploma when she earned her master’s degree.
Aside from providing specialized care for patients with the disease, the Turner Syndrome Center team plans to focus on conducting research that will help girls diagnosed with the disorder. “We plan to focus on the cardiovascular aspects of Turner Syndrome and reduction of cardiac risk in these patients,” Co-Vu says.
Turner syndrome is a common disorder affecting about 1 in 2,000 females. It affects all girls and women a little differently, but there are a set of common problems that affect most who have it. Heart defects are the most deadly. Those diagnosed also typically have short stature and infertility.
“The goal of creating the Turner Syndrome Center is to provide state-of-the-art, consolidated care for girls and women with Turner Syndrome,” Fudge says. “Having a specialized center will not only improve patient care, but also will allow the development of research in this area. The center will also create opportunities for social networking for families affected by the disorder.”
There are specific learning disorders that can present challenges to patients with the condition, but their intelligence is often normal, Fudge says. Because Behning has persevered through health struggles and her own learning challenges — she has dyslexia — to earn both bachelor’s and master’s degrees, Fudge recruited her to start mentoring other girls and women who come to UF Health to be treated for Turner Syndrome.
“As a kid with Turner Syndrome, and because of my stature, I was picked on a lot in high school,” Behning says. “My philosophy is twofold: You can either make the best of what you have or you can be frustrated. I have chosen to do my best.”
Across UF Health, on its campuses in Gainesville and Jacksonville, dozens of programs like this exist that help our patients today and are focused on finding new ways to help patients in the future. In many cases, they are programs that could not exist without having six health colleges, five research institutes and hundreds of experts located on the same campus and next to a renowned hospital.
Below are just a small sampling of some of the unique programs that exist within and because of UF Health.
Improving health through education
What’s the best way to help people in rural communities become healthier? Make sure the people charged with caring for them have the best training necessary to meet their needs. That’s the goal of the Rural South Public Health Training Center, a collaboration of the UF College of Public Health and Health Professions and the Florida Agricultural and Mechanical University Institute of Public Health.
Mary Peoples-Sheps, Ph.D., the UF senior associate dean for public health, led the development of the center in order to address what many experts foresee as a looming public health crisis — the lack of adequately trained public health workers to meet the needs of the communities they serve. Because public health workers often cannot travel for training, the center has focused its efforts on providing online tools and courses specifically tailored for each county’s specific needs, says Shalewa Noel-Thomas, Ph.D., the program’s coordinator.
“Where we live and the situations in which we live dictate our health status,” Noel-Thomas says. “In rural areas, there is limited access and public health workers are not adequately trained to provide high quality services. If workers are trained and the quality of the services are improved, then the health status of the people in those communities will improve, too.”
In addition to working with specific rural counties to train their health care workers, the center also has recently begun offering UF public health courses to interested workers online — for free. As part of this, they also established an online forum so public health workers in different areas can work together.
“With budget cuts and smaller county health departments, each county might just have one expert, so hopefully this will allow them to link up to other people,” said Mark Hart, M.A., the center’s coordinator for online learning.
How data can save lives
The word “data” generally does not generate warm, fuzzy feelings. But when it comes to discovering ways to better treat patients or cure diseases, data may just be the biggest lifesaver of all.
Separately, UF and Shands had lots of data about patients and their outcomes. The problem was the data about Shands patients ended at the hospital doors. The same was true for patients who visited UF physicians’ practices — and the ways health care data were categorized and tracked on both sides did not match up easily. For researchers trying to track patient outcomes to find ways to improve health care, this made wading through UF and Shands data challenging, says Gigi Lipori, the senior director of operational planning and analysis for Shands.
The establishment of the Integrated Data Repository — a collaboration of the UF Clinical and Translational Science Institute and Shands — changed that. Now UF Health data are pooled in a secure and HIPAA-compliant environment, allowing researchers to directly query an Institutional Review Board-approved tool for de-identified cohort identification, feasibility analysis and other clinical research planning activities. After the researcher has honed in on a population for study and receives Institutional Review Board approval, an honest broker provides data for the researcher’s use. In research, an honest broker is an organization charged with ensuring patient information is properly separated from the data researchers receive.
“This way we have data over the continuum of the patient’s treatment, which affords researchers many new opportunities,” says Lipori, the principal investigator on the project. “This could not have happened unless Shands, UF and the IRB were all headed in the same direction.”
Raising stroke awareness
Every 40 seconds, someone suffers a stroke.
Every 3.1 minutes, someone dies from one.
Stroke is the nation’s fourth leading cause of death, and UF Health Jacksonville has become a leader in stroke awareness and treatment, providing comprehensive inpatient and outpatient services for the diagnosis, management and rehabilitation of stroke patients.
But in addition to operating North Florida’s premier stroke center — UF Health Jacksonville has received the Gold Seal of Approval from the Joint Commission and was named a Comprehensive Stroke Center by the Agency for Health Care Administration — program leaders have worked to reach out to the community to raise awareness about stroke.
UF Health Jacksonville’s stroke educator Wayne Hodges has led efforts in the community, partnering with a Florida State College at Jacksonville to establish a stroke course for community health nurses and working with the Florida Association of Rural EMS providers to bring stroke training to Florida’s rural counties.
Ensuring that health providers are properly trained in stroke care is key, because with a stroke, every second counts.
“Sometimes the difference between life and death is a matter of seconds, and recognizing stroke symptoms is the first and most important step in getting patients stabilized and treated,” says Scott Silliman, M.D., a UF associate professor of neurology and medical director of UF Health Jacksonville’s Comprehensive Stroke Program.
Last fall, when flu season was in full swing, fewer people came to local emergency rooms in Alachua County for influenza-related illnesses than anywhere else in the state, according to the county’s Control Flu program.
It’s a public health feat, and faculty, students and staff from across UF Health played a big role in making it happen.
In 2006, UF partnered with the Alachua County Health Department and Alachua County Public Schools to begin offering free FluMist vaccinations to schoolchildren. The goal was simple — vaccinate the kids, who are super-spreaders of flu, to reduce flu transmission in the community.
“When you have a highly immunized population, what happens is you see a few cases and it dies,” says Kathleen Ryan, M.D., medical director of the Control Flu program and an associate professor of pediatrics in the UF College of Medicine. “Fifteen years ago, we would see one sick kid and then before you know it, half the schools are out with the flu.”
Developed in part by Parker Small, M.D., an influenza expert and professor emeritus from the College of Medicine, the program brought together experts from the Emerging Pathogens Institute and students and faculty from the colleges of Nursing, Medicine, Pharmacy, and Public Health and Health Professions to run the program and conduct research about it.
Last fall, Alachua County’s Control Flu program received $1.5 million from the county commission, enough money to allow them to support the program’s infrastructure for the next 15 years.
Because of this, program leaders will also have more time to improve the program through research and share their success with other communities.
“Our goal is to disseminate this program statewide and to show the program’s impact on reducing flu burden in a community ” says Cuc Tran, M.P.H., a doctoral student and researcher in the Emerging Pathogens Institute who has worked with the program since 2009. “We have been really lucky in being able to draw expert knowledge from different disciplines in order to tackle this complex project and we hope to share this with other communities.”
A hand in paw collaboration
In dogs that develop dilated cardiomyopathy, or DCM, death often comes as quickly as six months to two years after diagnosis. Sometimes, dogs die suddenly, before their owners even realize there is a problem. The disease is particularly common in Doberman pinschers, and when Amara Estrada, D.V.M., heard that a gene mutation had been discovered that was linked to DCM, she wondered if gene therapy would be possible to help these dogs.
After a few phone calls, a collaboration was born between Estrada, an associate professor of cardiology in the College of Veterinary Medicine and Thomas Conlon, Ph.D., in the College of Medicine, Powell Gene Therapy Center. Together, the researchers began a gene therapy clinical trial with Dobermans recruited from across the country.
“These kinds of things would be impossible for me in a silo,” Estrada says. “We are just one of six institutions with all of the health colleges on one campus. Putting us all together makes for really exciting things. There is so much collaboration potential.”
For Conlon, who works with researchers all over campus in his role as director of the Powell Gene Therapy Center’s Toxicology Core, his collaborations have allowed him to take part in studies that advance both human and animal health at the same time.
“Through collaboration, we are able to both help each other out. On our end, we get to find out how our therapies work before going into people, and they get to find out about a potential cure for a devastating disease that our four-legged family members also have,” he says.
One of his collaborations with the College of Veterinary Medicine includes conducting gene therapy on dogs born with a form of glycogen storage disease, which affects one in 100,000 people in the United States. Like his work with Estrada, not only are people benefiting from the research, but dogs are, too.