Between unclear state policies and privacy laws, finding concussion data can be a headache for reporters

Over the last decade, sports concussions have become an increasingly high-profile topic at all levels of competition, from children’s leagues to professionals. 

Research and coverage have sparked calls to keep children from playing tackle football until high school from former NFL players. In 2011, more than 20,000 former players sued the NFL and accused the league of hiding the dangers of concussions and head trauma. 

Munro Cullum Ph.D, a professor of psychiatry, neurology, and neurotherapeutics and neurological surgery with the Peter O’Donnell Brain Institute at the University of Texas Southwestern, says youth sports concussions are not an issue to be taken lightly. Cullum said one of the biggest issues is identifying a concussion in an athlete and removing them from play before they sustain another serious hit.

“What we want to avoid in those cases is them getting another concussion before the brain is healed,” Cullum said. “That’s the so-called ‘Second Impact Syndrome.’ If the brain sustains some swelling from one hit, and it’s not protected, and another … concussion occurs within that window of prior recover, the swelling can become significant and the symptoms may get either really bad or potentially [lead to] death.”

According to the Weill Cornell Concussion and Brain Injury Clinic, about 500,000 children visit emergency rooms each year for traumatic brain injuries, making them the leading cause for emergency room trips for adolescents. Children often take longer to recover from a concussion than adults. While most children are able to recover from a concussion, subsequent concussions before the brain is fully recovered can have life-altering consequences.

But reporters looking at concussions at the high school and college level face significant barriers in obtaining the data needed for these stories. School officials often deny requests for generalized concussion data, incorrectly citing privacy laws such as the Family Educational Rights and Privacy Act. Sometimes concussion information isn’t being tracked in the first place. 

Privacy Laws

As part of his sports beat assignment for class at Doane University in Crete, Neb., Trey Perry wanted to do more than the cut-and-dry game coverage and athlete features on the sports beat. He decided to take a look at athlete health at Doane, specifically concussions and CTE, a degenerative brain disease sometimes found in those with a history of repetitive head injuries.

When he did a story on the school’s new concussion protocol, the athletic department was happy to help. But as soon as he started asking for concussion numbers — specifically, the number of concussions in all sports for the last five years — he was stonewalled.

“They have been declining hardcore in giving me any numbers,” Perry, a junior, said. “And I made it clear that I don’t want to get anybody’s names because I know that would violate privacy [laws].”

Perry said when he first asked the school’s head athletic trainer for the numbers, the trainer cited FERPA and the Health Insurance Portability and Accountability Act. He said his subsequent requests were denied when officials cited only HIPAA.

Mike Hiestand, senior legal counsel for the Student Press Law Center, said the two statutes shouldn’t apply to concussion statistics.

“Both FERPA and HIPAA require that, in order to be a violation, there has to be information that personally identifies somebody. Statistical data doesn’t identify people.”

“Both FERPA and HIPAA require that, in order to be a violation, there has to be information that personally identifies somebody,” Hiestand said. “Statistical data doesn’t identify people.”

Hiestand also said that, even if the data could be used to identify someone, the concussion records may not count as an educational record, which FERPA was designed to protect.

“A medical, statistical report that says ‘we had three football players injured this year, suffered concussions,’ that doesn’t have anything [to do] with the student’s educational life,” he said.

While working on his story, Perry contacted at least 17 different people or places in looking for information, including the office that supervises the university’s athletic trainers and the local hospital, but with little success.

Perry’s situation isn’t unique. In December 2016, Media Milwaukee, the student newspaper at the University of Wisconsin-Milwaukee, published a story on their attempt to obtain concussion data from state high schools and districts. 

Over the course of the three-month investigation, the Media Milwaukee team sent open records requests to more than 200 school districts. Only 68 responded, and, of those, just 19 provided any concussion or football injury data. According to the report, some of the districts that declined argued that privacy laws prevented them from releasing the information. Others said they were “too busy” to fulfill the request or said the district did not keep that information.

Reporters for The Atlanta Journal-Constitution did a story on the concussion data for  62 college athletic programs, but several programs did not provide the information. The University of Alabama also cited privacy statutes. The University of Kentucky refused to release numbers broken down by sport — citing federal student privacy laws — though it did release totals for all sports. Of the 62 teams surveyed, five declined to give the information, eight did not respond and six acknowledged the request, but never provided the information.

Lee van der Voo, an Oregon-based journalist and managing director for Investigate West, a nonprofit news organization that focuses on investigative and explanatory journalism in the Pacific Northwest, requested “return to play” forms from the from 235 Oregon public high schools.

She said the Oregon Schools Board Association told schools to redact the majority of the form because it believed much of the information could not be disclosed due to FERPA. She said they got a form from one school that was useless after the redaction. But Voo said they won an appeals process, which has sped up the process.

“We have a [district attorney] opinion that…even though it only applies to this particular set of records, it seems to be persuasive enough in other circumstances that it’s helping us get things rolling,” she said.

With the number of schools involved and some of the confusion over privacy laws, Voo said it was a “herding cats” situation. She said one district believed the records couldn’t be released because they were subject to HIPAA. 

The main issue, though, were schools that simply did not respond. She said they have had to send numerous follow-up requests to get a response. Out of the 235 schools contacted, 135 did not respond, she said. 

After his numerous attempts to get Doane’s concussion data, Perry published a story in April about Doane’s lack of concussion tracking policies.

“Since concussions are such a huge issue, I feel like the public, especially the students here at Doane, would definitely appreciate somebody writing something on it,” Perry said. “It’s just snowballed into this huge thing.”

Concussion Tracking

In many cases, the availability of concussion data depends on whether the school actually tracks the numbers in question. Many states and high school athletic organizations do not require districts to record concussion or injury data, and neither the National Association of Intercollegiate Athletics or the National Collegiate Athletic Association require member schools to track concussion numbers, though the NCAA embarked on a $30 million partnership with the Department of Defense for a concussion study.

The Atlanta Journal-Constitution’s report noted that a number of high-profile athletic programs, including Auburn, Florida State, LSU and Ole Miss, said they did not have records tracking concussions by sport.

The Media Milwaukee report also found that the Wisconsin Interscholastic Athletic Association did not require schools to have a written concussion program, and the state’s central collection point for injury data only included “catastrophic” injuries, such as a broken neck or paralysis. The paper’s research indicated the state did not have a requirement that schools record or report concussion data.

State standards for tracking concussion data vary widely from state to state. For example, California has no centralized data collection system for concussion information, nor does it require individual schools or districts to track concussion data. 

“It seems to me like such a serious thing that they may want to be monitoring it.”

States that do not require schools to track concussion data include: 

  • Arizona
  • California
  • Georgia
  • Iowa
  • Kansas
  • Nebraska
  • North Carolina
  • Oregon
  • Wisconsin
  • Wyoming

Some states that require schools to track, but do not have a reporting system:

  • Delaware
  • Ohio
  • Utah
  • Washington

On the other end of the spectrum, the Idaho High School Activities Association requires schools to report their concussion numbers for each sanctioned activity through a portal on the organization’s website. Michigan, Connecticut and Hawaii have similar practices. Michigan, for example, posts a summary of their concussion data on the Michigan High School Athletic Association website.

Some states with a mandatory central reporting system:

  • Connecticut
  • Hawaii
  • Idaho
  • Michigan

Some states with an optional central reporting system:

  • Indiana
  • New Mexico
  • Texas

Concussion Registry

In 2016, Texas, which has more high school athletes than any other state, according to the National Federation of State High School Associations’ participation survey, launched the nation’s largest effort to track concussions among high school athletes.

Texas’ University Interscholastic League — its main body for high school activity governance — began a partnership with the University of Texas Southwestern Medical Center’s Peter O’Donnell Jr. Brain Institute to monitor concussions across the state. Cullum, who heads the institute, said the goal is to learn how many concussions are happening and to determine some best practices with the data.

When a school or district signs on to the program, the athletic trainer is expected to submit information to the registry through a mobile app. It is an extra step, Cullum said, but most of the information trainers already collect as part of the routine concussion evaluation. 

The system is currently optional, though Cullum said the UIL has indicated it may be willing to make it mandatory starting in fall of 2018. 

“We’ve got about a third of districts expressing interest in participating in the registry,” Cullum said. “We’re getting there. We’re moving in the right direction.”

Creating this new process wasn’t without its problems. Cullum said there have been some roadblocks, such as parents’ concerns about privacy, though he said the registry has a HIPAA and FERPA-secure cloud-based system. 

“It is a brain injury, so it’s not to be taken lightly.”

The Indiana High School Athletic Association also has a centralized reporting system, though it has been plagued by other issues. IHSAA Assistant Commissioner Robert Faulkens said the system is optional and many schools have stopped reporting. He said they also often reported suspected concussions as confirmed concussions, so the number of incidents was “grossly misrepresented.”

Still, a central reporting process can make obtaining the data easier for reporters. Instead of sending hundreds of requests to schools in a state, they could potentially contact the organization spearheading the registry. Many of the states with centralized reporting publish annual reports showing the number of concussions, such as Michigan.

Jessica McBride, the University of Wisconsin-Milwaukee professor who oversaw students’ work on the concussion story, said their project would have been doable if Wisconsin had a central reporting system like Michigan.

“It would have allowed us to know, and it would have been easy,” McBride said. “It seems to me like such a serious thing that they may want to be monitoring it.”

Though there are challenges in implementing complex reporting systems, the results — like those the UIL system hopes for — could have a huge role in improving player safety. And with the NFL reporting a six-year high for concussions in 2017, tracking instances of concussions could be more important than ever.

“It is a brain injury, so it’s not to be taken lightly,” Cullum said. “Public awareness has certainly grown with respect to the identification of a concussion. I think it’s on many people’s minds now, certainly more so than it was 10 or 20 years ago.”

SPLC staff writer Taylor Potter can be reached by email or at (202) 478-1926. He is on Twitter @wmtaylorpotter.

Want more stories like this? The Student Press Law Center is a legal and educational nonprofit defending the rights of student journalists. Sign up for our free Weekly News Roundup.