How Regenstrief Is Linking Dental & EHR Data to Drive Clinical Research

Dental records and EHR data remain siloed across the care continuum, presenting challenges for clinical research and patient-centered care.

This is despite evidence that oral health and overall health go hand-in-hand, experts have said.

For instance, research suggests that heart disease, clogged arteries, and stroke might be linked to the inflammation and infections that oral bacteria can cause. Additionally, studies have found that people who have gum disease have a harder time controlling their blood sugar levels.

A recent study out of Regenstrief Institute and Indiana University School of Dentistry reports on linking dental and EHR data to provide better care for individuals with Sjögren's, a chronic autoimmune disorder.

Sjögren's occurs when the immune system attacks the glands that make moisture in the eyes, mouth, and other parts of the body. Individuals impacted by the disease often lose their teeth despite taking good care of their oral health. Other parts of the body may be affected as well, with many people reporting joint and muscle pain.

There is no cure for Sjögren's, so treatment focuses on relieving symptoms and avoiding complications. The disease affects four million Americans, plus an unknown number who are undiagnosed.

According to Thankam Thyvalikakath, DMD, MDS, PhD, study author and director of dental informatics at the Indiana University School of Dentistry and Regenstrief Institute, delayed diagnosis is a significant issue for individuals with the condition.

"As dentists, we see a lot of patients experiencing a high incidence of tooth decay because of dry mouth," Thyvalikakath told EHRIntelligence in an interview. "Often, that dry mouth condition is mistaken for the medications they take, or due to hormonal changes with aging, but a small group of these people are affected with Sjögren's disease."

"Providers tend to think about those common conditions and may not test for Sjögren's," she explained. "Even if they do the test, sometimes there is a delay in the antibodies to express positively and indicate this condition."  

Thyvalikakath said that often, by the time a patient is diagnosed with Sjögren's, they have already experienced irreversible damage to different body systems, including losing most of their teeth.

Previous research investigating the oral health of patients with Sjögren's disease has primarily been prospective studies where researchers confirm disease diagnosis according to established criteria for clinical studies.

The retrospective study conducted by Regenstrief researchers was the first to determine Sjögren's diagnosis of dental patients by accessing EHR data.

The researchers leveraged the Indiana Network of Patient Care database, a repository of patient data from most Central Indiana healthcare systems and small physician practices, to conduct the study.  

A lack of data sharing between dental and healthcare providers leaves patients in charge of reporting new health conditions or medications on patients, which is not a surefire way to communicate vital health information.

The study found that just 31 percent of patients with an EHR Sjögren's disease diagnosis had documentation of a Sjögren's disease diagnosis within their electronic dental record.

"It's a huge gap in information because dentists rely on patients' report of their medical conditions," Thyvalikakath explained. "If they don't report their Sjögren's disease condition, we miss introducing preventive management to prevent tooth cavity."

While dental providers can call physicians' offices if they have questions about a patient, obtaining information from a physician's office is often time-consuming and cumbersome, leading to delays in treatment.

According to a 2022 study published in Frontiers in Digital Health, it typically takes a week or more for dentists to receive EHR data for a patient.

She noted that the historical separation of medical and dental care led the initial design of EDR or EHR to focus on each respective domain, and interoperability was not a priority.

"As a result, inconsistency and gaps exist on both sides, ranging from system data structures to clinical workflow," Thyvalikakath said. "However, in recent years, interoperability has gained attention. Current efforts in mapping EHR and EDR data to standard vocabularies can facilitate interoperability between the two systems."

She also pointed out that establishing regional or statewide health information exchanges (HIEs) could help support data exchange between the two professional communities.

The study revealed that 90 percent of individuals diagnosed with Sjögren's were women, which is consistent with previous research. However, more than 30 percent of these women had a history of joint pain, muscle pain, and fibromyalgia even before they were diagnosed with Sjögren's.

These conditions could be early symptoms of Sjögren's in women, indicating a potential biomarker for the disease.

Thyvalikakath and other Regenenstrief research scientists are currently in the planning stages of a study to investigate an early biomarker for Sjögren's.

"We recently received a grant to train dental students and faculty to perform practice-based research and team-based care because that is highly essential to managing people who experience these conditions," she explained.

"We are establishing a clinical research program to longitudinally characterize serum and salivary markers in dental patients who are susceptible for the disease and manage this disease through interprofessional communication," Thyvalikakath added.

The IU School of Dentistry will collaborate with the IU School of Medicine's rheumatology department, as well as a pharmacy researcher from Purdue College of Pharmacy, to educate dental students and faculty to conduct the proposed study.

The researchers will recruit women aged 30 years and above diagnosed with fibromyalgia and joint pain or fatigue. The study will measure baseline and follow-up salivary function tests as Sjögren's disease autoantibodies and protein biomarkers along this spectrum of patients, both in serum and saliva.

"We plan to follow up every six months and repeat saliva function tests over the next two to three years and then identify markers that could be predictive of an abnormal saliva function test," Thyvalikakath noted. "We are hypothesizing that even before people experience dry mouth, there could be some chemical changes happening in their saliva early on, which in turn can lead to an early marker."

Individuals with hypersalivation or decreasing serum autoantibody levels will then have a telehealth consultation with a rheumatologist and the Purdue pharmacy researcher, along with IU dental providers, to discuss the diagnosis and management plan.