How Better Health Data Sharing Can Optimize Care for 4 Million Sjögren’s Patients—and My Family

My Aunt Sally was diagnosed with Sjögren’s at 40 years old. Her grandmother—my great grandmother—also had Sjögren’s, but there were fewer ways to treat the disease back then. Sally tells me she feels lucky in that respect.

Sjögren’s is a systemic autoimmune disease that affects the healthy cells that produce tears and saliva—and consequently, the entire body. Along with symptoms of extensive dryness, other complications include chronic pain, fatigue, major organ involvement, neuropathies and lymphomas.

Because all symptoms are not always present at the same time and involve several body systems, symptoms may be diagnosed individually, and care teams don’t always recognize that a systemic disease is present. That’s why the sharing of complete and current clinical intelligence and patient histories between specialists and primaries is an important part of comprehensive treatment for this lesser-known autoimmune disease, one that is often intertwined with lupus and rheumatoid arthritis.

In fact, my Aunt Sally has shared with me that her Sjogren's has a lot of ailments that go with it, like fibromyalgia.

"The typical Sjögren’s patient sees an average of 4-5 different healthcare providers per year,” said Michele Champigny, who is the Vice President of Patient Services and Education at the Sjögren’s Foundation and worked with colleagues to answer some of my questions. “Many patients also need specialists to treat the wide array of symptoms and complications they might experience, including a gastroenterologist, neurologist, nephrologist, pulmonologist, dermatologist, gynecologist and more.”

Failures of care coordination and information about effective treatments have impacted Sally and many others who have this disease. For example, Sally didn’t know there was an eye drop available that worked better for people with Sjögren’s until her dentist told her about it. (Her Sjögren’s affects even her teeth).

“Unfortunately, this is not an uncommon story for Sjögren’s patients,” said Champigny. “Sjögren’s is difficult to diagnose, and many medical providers either know nothing about the disease or very little, including some rheumatologists who were taught that it is a ‘nuisance’ disease, when it is a serious and systemic disease. And because Sjögren’s can affect any body organ or system, a patient requires multiple specialists to manage their symptoms. These healthcare providers must develop better ways to communicate and collaborate with one another to ensure good patient care.”

Poor information sharing means that patients with Sjögren’s aren’t getting the coordinated treatment they need—frustrating patients and care providers who may not know that there’s a better way—or that their patient even has Sjögrens. Misdiagnoses cost the U.S. 800,000 deaths and serious disabilities every year.

In a recent study, 4 in 5 physicians said the inability to share data between information systems increases stress levels.

My Family Anomaly

Nine out of 10 diagnosed Sjögren’s patients are women. But my father and Sally’s brother-in-law, Daniel, learned he had the disease at age 65.

Diagnosed Sjögren’s now runs on both sides of my family. Just as the chances of that happening seemed low, the chances of my father being diagnosed also may have been slim.

My father visited his ophthalmologist because of his incredibly dry eyes and incredible thirst—and was told he might have Sjögren’s. His ophthalmologist gave him a handwritten note to take to his internist, requesting he get tested.

Even though my father’s internist was doubtful that he had Sjögren’s, he tested positive.

At the suggestion of his internist, my father was also tested for rheumatoid arthritis, which is often linked to the disease. But the rheumatologist failed to send the results to his internist. He asked my father to retrieve the report for him. “I was kind of surprised when my internist needed me to ask my rheumatologist to send him a report,” said my father.

From (near) missed opportunities for better treatment to missing clinical information, my family’s experience reads like a case study in poor care coordination and clinical intelligence sharing. It can all get very messy, fast. But this is far from uncommon.

A 2022 study found that 22% of primary care providers seldom or never send clinical information to specialists when making a referral, and about a third say they seldom or never receive information back from the specialist after a consultation.

But for many other patients, their physicians often need to perform a battery of tests to determine a Sjögren’s diagnosis.

“I was lucky to be diagnosed quickly,” shared my Aunt Sally. “A lot of people struggle for years with trying to figure out what it is.”

In addition to objective and subjective testing, physicians may also take a complete medical history to explore their patient’s symptoms and therapies prescribed.

As many as 4 million Americans have Sjögren’s, with an estimated 2.5 million Americans currently undiagnosed. The average time from the onset of symptoms to diagnosis is 2.8 years. Fortunately, my Aunt Sally’s and my father’s diagnoses were swift. But for many other patients, their physicians often need to perform a battery of tests to determine a Sjögren’s diagnosis. In addition to objective and subjective testing, physicians may also take a complete medical history to explore their patient’s symptoms and therapies prescribed. The physician will then consider the information as a whole to make their determination.

The sharing of accurate, up-to-date and easily accessed clinical and medication histories is an important part of caring for a Sjögren’s patient, making sure the body is treated as a whole rather than in parts. For effective treatment, this systemic disease needs the entire care team on the same page. And while there isn’t currently a cure for Sjögren’s, we know that treatment can be better in the here and now.

“Good communication and collaboration among providers will avoid costly and potentially dangerous mistakes and ensure the best care for the patient,” said Champigny.