More than medicine: UTMB Health coordinates complex care around the patient

People with rare genetic diseases often have what Dr. Erin Cooney calls “a doctor for every body part.”

A child with a neuromuscular condition may see a geneticist, neurologist, gastroenterologist, and cardiologist — each in separate appointments, on different days, often in different cities. When physical therapy, lab work, insurance approvals, and ongoing monitoring are added to the mix, managing care can become a full-time job for families.

The University of Texas Medical Branch (UTMB Health) is working to change that. As gene therapies and advanced genetic interventions become available, UTMB Health is building a coordinated, centralized model that brings specialists and services together, reducing unnecessary appointments, eliminating duplicate care, and easing the burden on patients’ daily lives.

“Our goal is to reduce the medicalization of our patients,” said Cooney, associate professor of Medical Genetics and Metabolism at UTMB Health. “We want them to receive the care they need and to receive it as efficiently as possible.”

The approach is especially important as UTMB Health expands access to gene therapies and other genetic interventions for rare and complex diseases. These treatments can offer benefits that would have been unimaginable just a few years ago, but delivering them requires far more than writing a prescription.

A centralized genetics hub

Gene therapies can cost millions of dollars and require specialized testing, extensive counseling, manufacturer contracts, insurance authorization, pharmacy coordination, and precisely timed treatment. Depending on the disease, the care team may also include anesthesiologists, surgeons, dermatologists, cardiologists, physical therapists, and other specialists.

Rather than having each clinical department develop its own process for obtaining and administering genetic therapies, UTMB Health is creating a coordinated hub within Medical Genetics and Metabolism.

Joseph Ray, MD, chief of Medical Genetics and Metabolism at UTMB Health, said the model enables a single team to manage the complex work of obtaining therapies, confirming patient eligibility, and coordinating clinical and administrative aspects. Specialists from other departments can then focus on the work they’re trained to do.

As the business and pharmaceutical complexities of healthcare have grown, physicians have increasingly found themselves managing responsibilities far removed from direct patient care.

"Most of these physicians didn't sign up to be pharmaceutical people and business people,” Ray said. “They signed up to treat patients.”

UTMB Health began with one gene therapy in 2020 and now manages five, with many more on the horizon. Weekly cross-departmental meetings bring together representatives from managed care, revenue cycle, pharmacy, legal affairs, and medical and surgical specialties to review cases and solve problems collaboratively.

“With UTMB Health leading the way in these therapies, we’re in a perpetual state of learning and adjusting,” patient navigator Kelli Knox said. “Flexibility, course correction, and adaptation are just part of the process.”

Care coordinated around the patient

The same coordinated model used to obtain and deliver advanced therapies can also improve patients’ routine and long-term care.

Cooney described a school-aged child with Duchenne muscular dystrophy who came to UTMB Health after receiving gene therapy. At another institution, the child had been seeing five specialists on a regular basis.

After reviewing the child’s records, Cooney determined that she could provide several aspects of his care herself, given her expertise in genetics and neuromuscular disease. The child still needed a cardiologist to monitor his heart, but other appointments were eliminated.

“We went from five doctors this kiddo was going to have to see throughout the year to two: me and the heart doctor,” Cooney said.

The UTMB Health model doesn’t just reduce the number of physicians involved in a patient’s care. It also reduces the amount of time families spend navigating the healthcare system. When possible, UTMB Health coordinates appointments at the same location and on the same day. A child traveling from another city might see Cooney, undergo physical therapy assessment, and receive cardiac testing in a single visit.

“Timing matters, too,” Cooney said. “Appointments for school-aged children can be scheduled in the summer to avoid missed school days. Coordinating care also means parents miss fewer workdays, families travel less, and life feels more normal.

“Technically, most health systems have multidisciplinary care. You can refer someone to a million different providers within your system. But true multidisciplinary care means coordinating it thoughtfully, which reduces the time and burden someone spends on clinical appointments.”

That distinction is central to the UTMB Health model. Multidisciplinary care does not simply mean that several specialists are involved. It means those specialists communicate, understand their roles, and organize care around the individual patient rather than expecting patients and families to connect the pieces.

A guide through a complicated system

Knox is often the first person patients meet after being referred to UTMB Health Genetics. Many arrive with complex medical histories, having already seen numerous specialists, and some are unsure why they were referred.

“Knowing why patients are referred is as important as listening to patients explain why they believe they are being referred,” Knox said. “It’s not unusual for them not to know the ‘why.’”

Knox gathers information, listens to concerns, and helps determine which providers and services are best suited for each patient. For gene therapy candidates, she coordinates follow-up care with multiple physicians and schedules same-day appointments to minimize disruption.

She also serves as a consistent point of contact in a system that can otherwise feel fragmented. Her role requires ongoing communication with patients, families, insurers, and staff in physician offices, especially when patients travel to UTMB Health from other states. Insurance authorization can require extensive coordination among UTMB Health departments.

“A significant number of employees from various departments and divisions throughout UTMB Health spend a great deal of time getting the various aspects to align,” Knox said. “To say this is a team effort is an understatement.”

Even for patients who ultimately cannot receive gene therapy, the coordination still connects them with specialists who can provide appropriate care. Knox recalls a child with Duchenne muscular dystrophy whose family hoped for gene therapy. The team worked through a language barrier, insurance questions, and travel arrangements, but circumstances related to the child’s condition eventually made him ineligible for treatment. Even though the child did not qualify for gene therapy, the family remained connected to Ray and the UTMB Health team for ongoing care.

Treating people, not diagnoses

For Knox, coordinated care is about helping patients live as normal a life as possible.

“Kids are still kids, and people are still people, regardless of what they’re dealing with,” she said. “They’re not the disease or the syndrome.”

Patients want answers H and effective treatment, but they don’t want their illness to dominate every conversation or dictate the shape of their lives. A coordinated system helps ease that burden by providing a trusted point of contact and handling more of the behind-the-scenes work.

Genetics is uniquely positioned to serve as the central hub because it spans organ systems and age groups. Geneticists care for patients across the lifespan and can bring together the specialists needed based on each patient’s diagnosis, treatment, and long-term needs.

“We individualize care,” Cooney said. “We see what everyone needs. We have meetings. We talk about who's coming up for follow-up and what can get done at the same time. We look at how much we can accomplish during a single visit for that patient, whether it’s a child or an adult.”

As UTMB Health expands its genetic therapy program, the guiding idea remains simple: The system should do more of the coordinating so patients can spend less time managing their healthcare.

“Making that connection is the victory,” Knox said. “Over time, we become not only their medical team but also their friends.”

Pictured above, from left: Kelli Knox, Dr. Erin Cooney and Dr. Joseph Ray