Audiologist Sherrie Davis, AuD, has been with the Penn Medicine Balance and Dizziness Center since its opening 29 years ago. Even though it was designed as an adult facility, children have been seen there throughout its history because there were so few resources available to them, she says. That changed when the Children's Hospital of Philadelphia (CHOP) created its own balance and vestibular program with assistance from Dr. Davis and others at the Penn center.
About five years ago, Robert C. O'Reilly, MD, was selected to spearhead the massive endeavor in part because of the vocal support he received from a longtime friend and colleague, Michael J. Ruckenstein, MD, MSc, FACS, Vice Chair of the Penn Medicine Department of Otorhinolaryngology – Head and Neck Surgery, Director of the department's residency program, and a Professor of Otorhinolaryngology at the Perelman School of Medicine at the University of Pennsylvania.
"Michael was one of my champions because I think he saw the value of the potential collaboration" between Penn and CHOP's balance programs, Dr. O'Reilly says.
Today Dr. O'Reilly is an attending physician in CHOP's Division of Otolaryngology, Director of its Balance and Vestibular Program, and a Professor at the Perelman School of Medicine.
Dr. O'Reilly's foray into pediatric otology began in 2002 when he transitioned to the specialty from neurotology and helped establish the Balance and Vestibular Program at what is now Nemours Children's Hospital, in Wilmington, Delaware.
"There were very few people who were testing children at that point. It was a new journey," Dr. O'Reilly says. "We knew the problems in children were different than in adults, but we didn't know much else. We didn't have normative data to work from, so we just started testing and evaluating kids. And we tried to call out the problems as we saw them."
When Dr. O'Reilly accepted CHOP's offer in 2017, he leaned on Dr. Davis, Director of the Penn Balance and Dizziness Center, to assist with this larger scale effort. She invited Dr. O'Reilly and his staff to the Penn center's monthly, multidisciplinary staff meetings. She and the center's audiologists also worked with CHOP's audiologists, supplementing their dizziness and balance education, and providing tours of their center.
"We taught them about our decision-making process with regard to which diagnostic tests we do and what modifications we made when we saw children," Dr. Davis says.
With every diagnostic tool at its disposal, expertise on every issue a child visiting a balance center could potentially experience, and same-day vestibular testing (CHOP's is the only program in the United States to offer it), CHOP quickly became a beacon for frustrated families seeking an accurate diagnosis, let alone an effective treatment.
The program's success also drew the interest of other hospitals exploring how to develop their own pediatric balance programs. Dr. O'Reilly flung open his doors and answered every question he could.
With similar gusto, he partnered with Dr. Davis a few years ago to present a joint training program for local physicians. Audiologists and physicians from both centers spoke, including Dr. Davis and Dr. O'Reilly. Their aim, she says, was to establish their centers as trusted resources amid a field where diagnosis is rarely straightforward.
"There's not a patient profile we haven't encountered. So, while we showed them how to develop a comprehensive balance center, we also encouraged them to send us their difficult patients," Dr. Davis says. "Our mission here at Penn is to educate, but it's also to care for patients. And if we can extend that reach outside our walls, I think it's a great opportunity."
A First: Plotting Data Across a Lifetime
Valuable as the two balance centers themselves are, the unique care they provide represents only a portion of their collaboration. Another aspect of it may revolutionize the diagnosis and treatment of dizziness.
The Penn Balance and Dizziness Center can see up to 150 patients per month, Dr. Davis says. The CHOP program sees far fewer, simply because balance concerns are less common among children. Still, it is the highest-volume pediatric program in the country today, according to Dr. O'Reilly. With such demand, Dr. Davis and Dr. O'Reilly realized they could have a significant impact on the field's most glaring void: research.
"A lot of things cause dizziness. It falls in the realm of ear, nose, and throat, but dizziness can be caused by neurological and cardiological issues, psychological issues, and all kinds of other things," Dr. Davis says. "It's an area where a lot of research is necessary."
Early in 2019, both centers began contributing to a shared database, which, in those first days, functioned as a kind of rudimentary spreadsheet that was manually updated, chart by chart. Almost immediately, the sheer amount of data was overwhelming.
"When a patient comes in with a balance complaint, they provide and share a tremendous amount of data about what they're going through," says Tiffany Hwa, MD, an adjunct professor in the Department of Otorhinolaryngology – Head and Neck Surgery at the Perelman School of Medicine who took over the database in July 2019 as a fellow. "In addition to that, they go through a battery of tests."
With help from her husband, a data scientist by training, Dr. Hwa developed a program that extracts all the relevant information from a patient's chart, including notes, and automatically enters the data points in a spreadsheet. The automation lessened the burden on providers and dramatically increased the rate of input.
Dr. Hwa estimates that by the early months of 2023, the database could include information on as many as 6,000 adult and pediatric patients.
Developing and curating a database of this kind is hardly an original idea. And yet, to Drs. Davis, O'Reilly and Hwa's knowledge, it's never been done before. Even more, no reliable data on pediatric balance patients existed prior to this, Dr. O'Reilly says.
"We've never really known how balance and vestibular problems change across a lifespan," Dr. O'Reilly says. "Now we have access to all of this data."
"We're putting more of the pieces together"
Already, the database is beginning to bear breakthroughs.
The majority of CHOP's balance and vestibular patients are diagnosed with vestibular migraine, according to Dr. O'Reilly. It's also common among adult patients at the Penn Balance and Dizziness Center.
"We were able to show that in female patients there seems to be a bimodal distribution of when it peaks, in puberty and again around middle age," Dr. O'Reilly says. "This clearly shows that what we've long suspected is true: There are, potentially, hormonal influences in females diagnosed with vestibular migraine.
"But we're just beginning to crack the surface on this," he says. "We're putting more of the pieces together. And I think in 10 years, we're going to have an absolute gold mine of information that we can go in a lot of different directions with."
Dr. Hwa notes that while there are several clear examples of conditions that span the lifecycle, with migraine disorders chief among them, "the way we think about most vestibular disorders today, and the way many specialists are trained, is largely separate between adults and kids, without a clear sense of overlap."
Like Dr. O'Reilly, she's confident that in a "few years' time," new connections and, in turn, new insights will emerge from the data that's being collected for the shared database.
"For a lot of patients, they come in and they tell you, 'I just had this episode for the first time.' And that's kind of the beginning of the story they tell," Dr. Hwa says. "If we can zoom out and look at a population level, we might begin to see trends. So, what I think is great about the database is that it's agnostic to personal experience."
Dr. Davis says that some of the testing she and the other audiologists administer has been altered based on findings from the shared database.
"We're doing some more formal testing. And we're using more screening tools instead of jumping right into those tests because we've learned most people are going to perform within normal limits in a certain age bracket," she says. "That allows us to streamline things."
Regardless of what comes of the database, Dr. Hwa says everyone's commitment to its development is perhaps the most powerful example of the collaboration between the Penn and CHOP balance programs.
"Everybody has to come with a collaborative mind, and everyone also has to give a little," she says. "This would be impossible without people willing to come to the table with that mindset."
"When we're on the same page, we've shown we can produce new and valuable data in terms of diagnostics and therapeutics," Dr. O'Reilly says. "It's also been wonderful for me to find such experts on the adult side because, when it comes time to transition my patients, I have people that I trust implicitly to give the best care in the world. And that is a really good feeling at the end of the day."
