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King County proposed mental health study on students after insisting it wasn't doing research

Seattle Times - 10/28/2022

Oct. 28—Since King County began screening schoolkids for mental health and other risks, officials have been adamant: They're respecting student privacy and not conducting research on them.

But in April, the program's coordinator was emailing school district officials with a new ask: The county and Seattle Children's were seeking a grant to do a "research study" on high school students beginning in 2024, and they wanted letters of support, according to records reviewed by The Seattle Times.

Only a month earlier, the coordinator, Margaret Soukup, stressed in an interview with The Times that King County and Seattle Children's were only evaluating the program to improve it. "What I know is we are not doing research," she said in March.

King County did not address why Soukup said there was no research while simultaneously laying the groundwork to do so. Katie Rogers, a county spokeswoman, said in a statement that "we contacted schools to gauge interest in doing further evaluation to understand the impacts" of the program, an adaptation of a process called SBIRT (Screening, Brief Intervention and Referral to Treatment, pronounced ESS-birt).

Seattle Children's and King County said they aren't moving forward with what they dubbed the "SPIRIT Study." "After a competitive process, the proposal was not selected for funding," Children's said in a statement attributed to Dr. Cari McCarty, a research professor there who is also the principal investigator for evaluating King County's SBIRT program.

Had they pursued the study, King County and Children's said, it would have undergone the standard ethics review for research.

As with King County's SBIRT program, the proposed study would have relied on a screening tool custom-built for King County to collect some of the most sensitive information in kids' lives, from suicide attempts to gender identity. Calling the program "novel," the county hired a team led by McCarty to evaluate how well it works for the more than 20,000 students who have been screened.

A Times investigation in August found school protocols could put student privacy at risk, while some ethics scholars questioned whether the program crossed into research — despite a determination from a Seattle Children's review board that it didn't.

The revelation that King County and Seattle Children's proposed conducting a research study on students participating in SBIRT raises fresh questions about the intent behind the program. Formal research generally requires that participants or their parents provide informed consent, a high bar that often limits how many join a study.

Because the screening program is voluntary and was determined not to be research, schools have not been required to obtain signed consent from parents for their kids to participate. Most districts offer parents the option to opt their kids out.

As schools prepare for a fifth year of screening, some broader goals of the $30 million initiative are coming into focus. A paper published earlier this month found a small sample of King County students who participated in the screening felt more connected to adults at school after a brief intervention with a school staffer, a measure it said is associated with lower risk for substance use and higher academic achievement.

The paper was part of a series of studies in the Journal of Adolescent Health that aim to "buttress the evidence base" for screening youth, according to an accompanying editorial.

For the research study King County and Seattle Children's had proposed, each school would pick two grade levels to be screened and "eligible students would be invited to join the research study." Participating schools would get an extra $60,000 a year to help recruit students for the two-year study, according to a summary shared with school districts. One grade level would receive an in-person intervention, and the other group would receive computerized feedback.

Leading the study would have been McCarty, who occupies an unusual role as principal investigator evaluating the SBIRT program and the co-creator of its central feature — a screening tool called "Check Yourself" that has also been central to her research agenda outside of King County schools.

McCarty was subject to a conflict-of-interest management plan for her financial interest in Check Yourself at the time King County hired her to evaluate the program. She has said she never received pay related to the licensing of Check Yourself and has given up rights to any future compensation, and Seattle Children's affirmed that she no longer has any conflicts.

There is no question that screening kids has the potential to discover their internal turmoil that might not otherwise come to light, an increasing focus of schools as the suicide rate for kids ages 10 to 14 doubled from 2011 to 2020, according to the U.S. Centers for Disease Control and Prevention. Schools have praised the program for revealing student struggles, and some students have said screening shows their schools care about them.

In exchange for county money — Seattle Public Schools received $1.1 million for three years — school districts share data on student responses and feedback on the program. All schools have to use Check Yourself, owned by Seattle Children's and licensed to a for-profit Canadian company called Tickit Health.

Check Yourself is administered in 11 school districts and one private school, Kennedy Catholic High School in Burien. (Lake Washington School District ended its participation, saying it has adopted a different model to tend to student mental health).

The digital questionnaire transmits student responses to Tickit, under contract with King County, which replaces student names with distinct identifiers. Schools can access Tickit's platform for student answers and link them back to student names, which only schools are supposed to know.

Privacy experts, however, have voiced alarm at how the data is collected and shared. Even without names, they say, the data contains enough demographic information, including grade, ethnicity, language spoken, and details that students write in like the name of a pet or sibling, that individuals could be identified.

Adding to those concerns, all school districts, with the exception of Highline, consider the nameless student responses to be a public record anyone can obtain, and five districts provided it with few or no redactions, The Times reported in August.

While conventional SBIRT focuses on substance use, King County takes a broader approach — asking about student risks and strengths and collecting information on their use of illegal drugs, sexual orientation and family conflict.

McCarty said in an online presentation last week that youths who identify as transgender or nonbinary "were at hugely increased risk across the board." Asking these questions, she said, is "a way to provide context to what the student may be going through identity-wise."

The Seattle Children's-led paper published in early October also included findings from a focus group of 26 students, saying they preferred to be screened in a classroom with other students.

But student-response data reviewed by The Times indicate that not all students feel this way.

"The large font size and answers makes it difficult to write things down in a large room full of peers," a Tahoma School District student wrote. "Any person behind me can see these questions and answers that are supposed to be private."

Seattle Children's, in a statement attributed to McCarty, said that this concern didn't come up in the focus groups and recommended that proctors "remind students to keep their eyes on their own screens, and consider the setup of the screening space to ensure confidentiality."

King County awarded Seattle Children's $588,000 to evaluate the SBIRT program and has so far published one report on middle school students, apart from the academic paper. In July, the evaluation team received an additional $152,000 to deliver a "four-year culmination report" to include high schools.

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