This is the first in a series of exclusive MedPage Today reports focusing on Heads Up, the CDC's concussion awareness and prevention program. These reports will analyze the program's design and efficacy.
At a medical meeting in late-October, researchers at Texas Scottish Rite Hospital for Children in Dallas had a dismaying finding to report.
Among 185 school athletes who were examined for concussion at the hospital's sports clinic in 2014, they suffered the head injury -- without being cleared by a medical professional, and despite medical guidelines and state law that should have kept the students on the sidelines.
"We still have work to do to change behaviors to protect short- and long-term brain health of youth athletes," said the study's lead author, in a statement.
The report was particularly embarrassing for the CDC, which 13 years ago began a program called Heads Up aimed at preventing exactly such behavior. The agency has promoted Heads Up relentlessly and gained high-profile backers such as the National Football League, and it has been embraced by governments, youth sports organizations, and top-level school officials across the country.
Yet the Texas study and others suggest that Heads Up has fallen well short of its ultimate goal, which is persuading athletes and their coaches to take head injuries seriously.
The Heads Up Program
was launched in 2003 by CDC's Injury Center and 26 partners, including the National Football League, YMCA and medical societies. Organizers produce and distribute resources, statistics, and overviews of concussion laws and policies focused on high school sports, youth sports, parents, schools, and health care providers.
The materials describe concussion and its symptoms, and urge athletes to report head injuries that might be concussion. A advises (in big block letters, underlined) that any athlete with a possible concussion should be removed from play immediately "and until cleared by a health care provider."
For , Heads Up offers online training, diagnostic and assessment tools, discharge instructions, and "return to play management" guidelines.
"The goal of Heads Up," by Injury Center leaders earlier this year, "is to protect children and adolescents from concussions by raising awareness, enhancing knowledge, and informing action to improve prevention, recognition, and response to concussions. This is done by translating the latest concussion science into educational products tailored specifically for the target audiences, and working with partner organizations to disseminate and integrate concussion education materials and messages into their existing systems and programs."
The program is distinct from one called Heads Up Football, which promotes tackling and blocking techniques intended to reduce head injuries, although CDC materials are central to the program, and it is controversial in its own right. See this sidebar story for an explanation.
CDC said it developed some 50 products and distributed more than 6 million print materials for the program. "It's an awareness campaign, some have shown it reaching a large audience," Heads Up director , told MedPage Today in an October interview. (That interview, which was conducted by phone, was monitored by a public relations officer.) A 10-year listed "key accomplishments," including forging partnerships, creating and distributing materials, training coaches, and making media impressions.
In of the Heads Up program on youth sports, Sarmiento and others reported that "The 'Heads Up' materials demonstrated that youth sports coaches' [sic] were able to appropriately prevent, recognize, and respond to sports-related concussions after reviewing the materials ... Broader dissemination of these (coaches) materials to coaches can potentially support implementation of the growing number of state, organization, and league laws or policies on concussion in sports."
Other evaluations commissioned and co-conducted by the CDC also concluded that Heads Up, in the words of one, is "making an impact" on concussion awareness.
Others outside the CDC have also supported Heads Up. "The CDC Heads Up clipboard sticker is a great tool for every coach to have during practice and games," , director of athletic medicine at Princeton University, told a .
"The CDC has done a lot to educate healthcare providers," she also said. "This online course is available for all physicians from all training. The CDC training along with additional sports medicine expertise as it relates to concussion management, is useful in providing educational information to clinicians."
In September, Putukian told MedPage Today, "I do think they [Heads Up materials] are helpful and informative," although it should be noted that she helped develop some of them.
"The need is so high to address. It's great that [Heads Up] is offered and offered for free," said , a kinesiology and physical education professor at Northern Illinois University.
And , of McGill University in Montreal, credited Heads Up and a similar program in Canada with "doing a decent job disseminating info."
But is that "info" making a difference on the field?
Is Knowledge Enough?
"While most parents of young athletes demonstrated some knowledge regarding concussion, important misconceptions remain regarding the definition, symptoms, and treatment of concussion. This study highlights the need for health care providers to increase concussion educational efforts," read the conclusion of youth football parents that tested their knowledge of Heads Up's major points.
"A number of investigations have shown minimal or no effect of these strictly knowledge-based programs," said , a sports concussion researcher at Harvard, "and when there is an effect, it has been rather transient."
Her take dovetails with a 2013 Institute of Medicine report, that identified "a lack of research concerning the effect of these interventions on behavior."
Caron questioned whether the concussion awareness programs have reached their target audience at all, citing he co-conducted of high school coaches' knowledge at a well-resourced school. "Even the high school coaches we studied did not know much about concussions," he said. "They didn't feel competent in their knowledge even though they had major resources."
He also noted, "I don't think knowledge alone is enough, as we have seen with smoking."
"We think [concussions] are being diagnosed and reported more often," said , of the University of Denver, who has been collecting data on concussion reporting behavior for 12 years. That's likely due to increased awareness, she said.
But such increases can't all be credited to Heads Up.
"Other factors besides knowledge are likely influencing student-athlete concussion reporting behavior," read of high school athletes that also employed Heads Up resources.
The media are an obvious "other factor." Fields said an ongoing study had found that appearances of the word "concussion" in Sports Illustrated have increased "exponentially" over the past 20 years.
"The single biggest reason [for increased awareness] is it's on ESPN," said , who directs the University of North Carolina's injury research center. (Of course, the possibility that the Heads Up campaign helped instigate media interest can't be discounted.)
Fixes
"The [Heads Up] program was put out there quickly because we needed something," said Paul Wright, the Northern Illinois professor. "It needs to be updated," if for no other reason than that laws in some states now go beyond the Heads Up recommendations.
Wright told MedPage Today that most states now have specific requirements for the type, amount, and frequency of concussion education, "and it is unlikely any single program can address all of them equally ... The policy environment is changing so rapidly. It makes the role of Heads Up different and lessened."
"Heads Up was great in its time," said Marshall. "There was nothing, nothing ... We started from ground negative-100."
But, he went on, "You wouldn't do Heads Up in 2016, because the world is changing," Marshall added. "You'd do a lot more social media."
Marshall argued that Heads Up needs to be more focused on its target audience and use the channels those people use, such as Instagram. "There's a need to create new products. That doesn't mean they [the concepts] are out of date, it just means the delivery of it needs to be revised."
Heads Up's leaders appear to recognize that changes need to be made. Director Kelly Sarmiento told MedPage Today in October, "As the field has evolved and the American public and views on the issue have evolved, we are looking to adapt. Now we are looking more at how we can update to focus on knowledge translation, but it [Heads Up] is not a campaign set up on behavior change. We are working to do it in the future."
However, when asked why "knowledge translation" (i.e., actual behavioral change) wasn't incorporated into the program earlier, CDC officials declined to comment, referring the question to its Freedom of Information office.
Next: Independent evaluations of Heads Up reach different conclusions than the CDC's own assessments.