The study was touted as groundbreaking, a “first” for the AFL.
The league was to embark on a multimillion-dollar research project involving the world-renowned Florey Institute of Neuroscience and Mental Health and the AFL Players’ Association to examine the long-term effects of concussions on the brains of football players. It was an issue the league was under increasing pressure to address.
Former players had responded in “droves” to take part, an AFL Players’ Association press release boasted – “hundreds” reportedly came forward. They were keen to share with their former employers how head traumas suffered on the field were affecting their health into retirement.
But now, almost eight years later, mystery surrounds what became of the heralded study, and what happened to the data, including brain scans, collected from retired players who took part.
Despite repeated efforts, the AFL and the Florey Institute have declined to answer questions about it when approached multiple times by Guardian Australia. Key researchers involved have also declined to comment. Meanwhile, Guardian Australia has discovered the 2014 groundbreaking study is among other studies funded by the AFL that are being queried.
Central to the concussion studies and policies is Dr Paul McCrory, the world-renowned neurologist and concussion expert who was chair of the international Concussion In Sport Group (CISG), and the lead author of four of the CISG’s last five Consensus Statements on Concussion in Sport. These are highly influential papers which the AFL and other professional sports leagues use as the basis for their concussion guidelines and assessment protocols.
Until January 2021, McCrory was the AFL’s key concussion adviser, and the AFL has said that to date he still sees players with head injuries referred to him from AFL clubs in a private capacity.
In recent weeks though reports have emerged of allegations that McCrory plagiarised the work of other researchers. First there was one paper, then another and subsequently more where he was alleged to have copied tracts of other people’s work without attribiution. McCrory was quoted on the website Retraction Watch apologising for some of the alleged plagiarism, explaining that they “were not deliberate or intentional” errors.
Guardian Australia has also revealed that, in 2018, McCrory voluntarily provided an enforceable undertaking to the Medical Board of Australia, which is still in effect, not to perform neurodiagnostic procedures, nerve conduction studies, or electromyography until approved to so. McCrory has not responded to multiple request for comment by Guardian Australia.
These revelations have left the AFL with questions to answer and late on Thursday the AFL announced it was launching a comprehensive and independent review of McCrory’s work.
The statement from the league said: “While Associate Professor McCrory has no ongoing role with the AFL, was not employed by the AFL and was not the only provider of medical advice on concussion to the AFL, he was an important and long-standing adviser on concussion and he was understood by the AFL to be a pre-eminent expert in the field, including up until recently holding the position as chair of the Concussion in Sport Group and in that capacity worked previously with many leading national and international professional sporting organisations.
“As is common practice in academic institutions and other organisations in which allegations of plagiarism are made or admitted, the AFL believes it important as a matter of integrity to ascertain the status and the reliability of past research activities and outcomes, and clinical work in which Dr McCrory has been involved for the AFL.”
But still left hanging is what has happened to the groundbreaking concussion study that the AFL, the Florey Institute and the Players’ Association so enthusiastically promoted?
The league has been unable to answer questions from former players asking them what became of the studies they took part in, including their sensitive data such as brain scans, and repeated requests for answers to questions about those studies from Guardian Australia have also gone unanswered.
Melbourne neurophysiologist Associate Prof Alan Pearce, who studies concussion in athletes, said: “Participants should be given a report for their own medical records. But no one seems to be able to answer what happened to these AFL studies or the data.”
The mystery seizures
John Barnes was one of the retired players who offered to take part in the AFL and Florey Institute initiative. Throughout his 202-game career, Barnes suffered a dozen diagnosed concussions and many head knocks causing blurred vision and dizzy spells – also common symptoms of concussion. He broke his jaw three times, his nose repeatedly, and suffered countless lacerations.
And those were just the injuries to his head.
So he was hopeful when he read about the concussion study – news of the project had garnered positive media coverage – and Barnes offered himself up to take part.
One year earlier, in 2013 at the age of 43, he had begun suffering seizures despite being “probably the fittest I’d been since retiring from AFL in 2001”, he told Guardian Australia.
“There just wasn’t a logical explanation why I would suddenly out of nowhere start suffering from seizures,” he said. “There was no family history. There was nothing to go by other than the connection to the concussions and knocks to the head I received throughout my AFL career.”
After consulting specialists, Barnes was given a diagnosis of epilepsy. He also suffered from memory loss and mood swings.
“My independence was stripped from me,” Barnes said. “I was unable to drive a car or take a shower or swim without supervision – those simple things in life we all take for granted.”
Barnes’ wife, Rowena, wrote to the then AFL Players’ Association manager, Brad Fisher, disclosed Barnes’ diagnosis and asked if he could take part in the study.
In an email seen by Guardian Australia, Fisher agreed and said he “hoped that our screening process may be able to provide more answers to you and John”.
The study was to take place in three parts. Ex-players would answer an initial short survey asking them about their symptoms and experiences. Those whose answers raised alarm would then be contacted and asked to complete a second, longer survey. In a first for the code, the partners of former players would also be invited to contribute to the second stage.
Florey Institute researchers and then-AFL medical director Dr Peter Harcourt would then determine which players from the second survey should receive brain scans.
In November 2015, more than a year after responding to the survey with all of his symptoms, Barnes received an email from Harcourt thanking him for his time but informing him that he would not be progressing through to the second stage.
The email read: “Based on your responses it appears that immediate follow up is not required at this stage … however a consultation with one of our specialists will be organised in due course to address your ongoing symptoms.”
Barnes said he and his wife “were horrified and disgusted” by the response.
“I remember thinking, how can having seizures not be enough to warrant further immediate investigation? To this day I was never contacted by a specialist from the AFL for any scans, let alone any follow-up scans relating to my responses on the concussion survey.”
The allegations against McCrory
At the centre of the AFL’s study was the link between concussion and chronic traumatic encephalopathy, known as “CTE”. CTE has been increasingly connected to contact sports and has been found in former AFL players including the late Graham “Polly” Farmer, Danny Frawley and Shane Tuck.
It often manifests in life as behavioural changes, memory loss and other cognitive impairment, mood swings, Parkinson’s-like symptoms and mental health issues including depression and anxiety. It is unable to be definitively diagnosed except postmortem by autopsy.
McCrory was integral to the partnership with Florey. He was an associate professor at the University of Melbourne and on the AFL’s scientific committee, which was responsible for structuring the partnership’s research and projects.
He is also widely known to be sceptical of the link between concussion and CTE.
In 2014 the ABC reported on comments given by McCrory to a Fifa conference the previous year, where he suggested CTE was overplayed by the media. “It’s fair to say there is increasing scepticism around the world as to whether this condition actually exists or not, and that might seem very strange and provocative to say because if you listen to the media you get a very different story,” McCrory reportedly said.
As well as being a high-profile public spokesperson about concussion in sport globally, McCrory was chair of the CISG – an international body of experts who have met every four years since 2001 to provide sporting codes around the world with blueprints on how to manage head injury. The consensus statements they produce have been used to inform the concussion management policies of professional leagues including the NFL, World Rugby and the AFL.
The AFL’s concussion policy draws heavily from this document, as does its concussion policies provided to amateur and community leagues playing Australian rules football.
McCrory is the lead author of four of the five consensus statements.
But in the past fortnight, amid multiple accusations of plagiarism, McCrory resigned as the chair of the CISG.
McCrory has not responded to requests for comment about the allegations.
McCrory also did not respond to questions about what became of the joint AFL/Florey Institute concussion study which took place while he was involved with the league’s concussion response.
The results of the 2014 concussion study have never been published in a medical journal. The AFL has never revealed how many players took part, how many progressed through to phase-three brain scans, what those scans found, which institution gave the study ethics approval, or how the findings have been used to inform the AFL’s concussion policies since. The AFL did not respond to multiple attempts from Guardian Australia to ask those questions.
Pearce said he is concerned about what happened to data from players such as Barnes who contributed to the study.
“My understanding is there were two iterations of this survey … and neither have ever been discussed or even put in preliminary reports to conferences like the Concussion in Sport Group conference in 2016,” he said.
“There’s opportunities to put this data on pre-print services which are not peer-reviewed but at least people can see preliminary data for transparency. And I feel for the players who participated and have been given no feedback at all.”
The AFL Players’ Association media executive, Bobby Beaton, said: “This was ultimately an AFL program/study – our involvement was to direct any players who wanted to take part their way – so it’s up to them to provide any results”.
Harcourt, who is now the AFL’s medical consultant, also referred Guardian Australia’s questions back to the AFL. Though Harcourt was one of the leaders of the study, he told Guardian Australia that because he is no longer chief medical officer role, he could not reply.
The Florey Institute did not reply Guardian Australia’s questions about the study, including what became of brain scans that were to be conducted on players with the most serious symptoms, or how ethics approval was granted. The institute did comment on the plagiarism allegations.
“The Florey Institute is currently assessing the matter related to these recent allegations,” an institute spokeswoman said. “The Florey Institute holds a proud reputation for world-class research and translational outcomes and treats all matters concerning scientific integrity with the utmost seriousness.”
The University of Melbourne, where the Florey Institute is based, has removed McCrory’s profile from its website in the aftermath of the allegations. A university spokesman told Guardian Australia: “Dr Paul McCrory’s honorary appointment has been temporarily suspended while a review, which is in its initial stages, takes place.
“No final decisions have been made. Any concerns about research integrity are examined in accordance with the Australian Code for the Responsible Conduct of Research.”
The 2005 study
The 2014 study is not the only AFL concussion study over which questions are being raised.
In 2005, McCrory was lead author on a published study of 160 AFL footballers and their headaches. The study compared the headaches and related symptoms reported by the athletes, who were randomly selected, with the frequency of headaches reported by non-athletes in the community.
It found there was no significant difference between the players and the community sample in terms of the number of headaches experienced. Footballers did report more headaches in the three months before the survey, during the competitive playing season, the survey found. The study said all players also gave written informed consent. The study says data for the community sample was collected in 1998, but does not say what year the players completed their survey.
The published study does not describe how the AFL players were randomly chosen, or what they were asked as part of the study. The AFL did not respond to questions from Guardian Australia about the study or its methodology.
McCrory also did not respond to questions.
Data analyst Nick Brown, who is affiliated with Linnaeus University in Sweden and reviews scientific papers for errors, said: “Imagine the complexity involved in getting professional athletes to participate in such a study, and your amazement – and that of other researchers in medicine – when you got a 100% response rate from AFL players selected at random.”
“As a minimum, this study would also need ethical approval and funding, neither of which are mentioned in the paper.” It is standard for published studies to report on both.
“Coding up the results would be tedious work that someone would need to be paid to do,” Brown said. “Even getting the players’ home addresses to mail the surveys would be difficult; you presumably can’t just look most of them up in the phone book.”
Brown said if the study was organised through the AFL or its clubs, measures would need to taken to ensure that the players completed the surveys without consulting each other or being told what to say, in order for the results to be rigorous.
“There ought to be traces of at least some of those activities,” Brown said.
The University of Melbourne, where McCrory was based at the time, did not respond to questions about the study.
The search for answers
The silence that has greeted questions being asked about its studies has been a common response from the AFL over the past few weeks.
But on Thursday its statement announcing the review of McCrory’s work was definitive.
In the statement a AFL spokesman said: “The No 1 priority of our code is to protect the health and wellbeing of all people who participate in our game and so we have made this decision to hold an independent review.”
For John Barnes, the search for answers goes on. He says he never wants the health of other players to suffer as his own has. He wants the AFL to be forced into transparency.
Barnes says he wants “truthful answers and not the bullshit answers we are getting at the moment”.
Asked if he would have pursued a career in AFL if he had known the impact it would have on his health in retirement, Barnes responds simply: “No.”