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An algorithm that scans electronic health records and alerts doctors to a patient’s eligibility for SPARK, a large genetic study of autism, led to a fourfold increase in enrollment in the project, according to the lead investigator of a new study. The likelihood of enrollment was particularly elevated among Black and Asian people, a companion study shows.
SPARK aims to recruit 50,000 autistic people and their families in an effort to learn more about the genetic factors underlying the condition. It is a multi-site project based in the United States and funded by the Simons Foundation, Spectrum’s parent organization.
SPARK researchers at Texas Children’s Hospital in Houston built a Best Practice Alert, or BPA, for the hospital’s electronic health record system. The tool scans a person’s electronic medical record during a clinic visit and alerts their physician if they are eligible to enroll in SPARK.
The alert pops up only for people with an autism diagnosis who aren’t already enrolled in the study, and it briefly explains the study’s purpose and highlights the requirements to participate, including consent forms and a saliva sample. A physician can either dismiss it or tell the person about the alert and record whether they’re interested.
The SPARK alert popped up 3,634 times from September 2018 to September 2019, the researchers found. And after seeing the alert, physicians told their patients about SPARK 52 percent of the time.
Of the alerted patients, 64 percent said that they were interested in enrolling, whereas 34 percent declined further contact.
“We had a sevenfold increase in clinic referrals, and then a fourfold increase in our number of enrollments” after rolling out the alerts, says lead investigator Robin Kochel, associate professor of pediatrics at Baylor College of Medicine in Houston. Both studies appeared in the Journal of Autism and Developmental Disorders in January.
She and her colleagues continued to track the 1,203 people who expressed an interest in SPARK and found that 58 percent enrolled, completing the paperwork and sending in a saliva sample. These people were almost twice as likely to enroll as those who heard about the study through social media or at community events.
Non-white people who heard about the study via the alert were also vastly more likely to complete their registration than those who heard about it elsewhere. They did so 68 percent of the time, compared with 54 percent of white families.
“I really liked how they focused not just on the enrollment piece — recruitment and registration — but were really actively monitoring completion,” says Emily Neuhaus, assistant professor of psychiatry and behavioral sciences at the University of Washington in Seattle, who was not involved in the study. Neuhaus, co-investigator for the Seattle SPARK site, says the findings might encourage other sites to implement a BPA.
In the past, SPARK sites have often organized events to recruit families face to face. The pandemic quashed that, at least for a time. Over the past two years, sites have refocused their recruitment efforts toward social media, telehealth and in-person checkups.
“That’s when we really pivoted towards the BPA, because health care visits continued,” says Paul Carbone, a physician and professor of pediatrics at the University of Utah in Salt Lake City. Carbone leads the only SPARK site in the state and helped to implement a physician alert there, too. The Utah alert is silent and unobtrusive, he says; it pops up in the background of a doctor’s screen.
At autism-specific clinics in Utah, physicians click on the alert about 10 percent of the time, Carbone says. In primary care clinics, the rate is 30 percent.
In both Texas and Utah, these alerts are the top recruitment tool for the study, possibly because of the close trust shared between physicians and parents.
“I have patients who I’ve seen for 15 continuous years, so you can imagine that I have seen some of them hundreds of times throughout the years,” Carbone says. “There’s this level of trust that emerges. When we need to lean on our patients to do something that we really feel like would be beneficial for their health or for the public health, that’s when we sort of cash in that trust.”
Still, doctors have a love-hate relationship with the alerts, especially when they trigger for something that seems unrelated to clinical care, such as a research study. Most clinical alerts are reminders to check heart rate, blood pressure or glucose levels.
“On our good days, we feel like they help patient care. I mean, I’ve forgotten to look at somebody’s blood pressure occasionally,” Carbone says. “And then on our bad days, when we’re in a hurry and we’re seeing many patients, it can feel intrusive.”
Physicians slowly become fatigued by the pop-ups, too. “The number of providers who dismiss the alert has increased over time,” Kochel says. Today, about 60 percent of physicians at Texas Children’s Hospital dismiss the alert, up from 49 percent during the study period.
Cite this article: https://doi.org/10.53053/FWTX9478