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State of the rehab nation

The driving force of rehabilitation research in America has big plans to speed treatment development and improve skills, its outgoing president Dr Deborah Backus tells Andrew Mernin.

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Deborah Backus is navigating rush hour traffic when she takes a cross-Atlantic call from NR Times.

She’s understandably busy. The organisation she oversees is about to host the biggest rehab research event on the planet. But president of the American Congress of Rehabilitation Medicine (ACRM ) is just one hat she wears.

Deborah (pictured) is also director of MS Research at the Shepherd Center in Atlanta, Georgia. This is among the top 10 rehab hospitals in America, specialising in brain and spinal injury and neuromuscular conditions.

A few days after our conversation, the end of her ACRM presidency will be officially marked on stage in Chicago at the organisation’s annual congress – the global flagship event in rehab research.

She’ll remain deeply embroiled in the work of the group, however. The ACRM aims to improve the lives of people with disabling conditions, by providing researchers with the tools they need to carry out rehabilitation studies.

Part of its remit is to seek out more funding for such projects. “We work with funders, on a national level and in foundations in different areas, to get more funding for research. This is definitely a challenge as we move forward and I suspect its is all around the world too.”

Another crucial role of the organisation is to aid the translation of evidence into clinical practice.

“We work to disseminate our findings and provide a forum for researchers to help inform clinicians and help them to translate that evidence into practice.

“Even if we do that at our very best, we’re still a little bit at the mercy of the payers (which fund rehabilitation in the US). The challenge is to figure out the best way not only to get the information to the clinicians treating patients, but also to the people making decisions about reimbursement and which services are paid for.”

Deborah believes the progression of evidence from the lab into the lives of rehabilitation patients is “improving, but we still have a way to go”.

“We’re still learning the best, most meaningful way to translate evidence into practice. Partly we do this through our annual conference, but we are also launching a training institute to reach those frontline clinicians and educate them about the evidence-based practices.”

Other such measures include sharing research findings in webinars, on social media and in the ACRM’s two published journals.

“In our the Archives of Physical Medicine and Rehabilitation we also have information and education pages which present information on evidence based practice in a meaningful way for patients, and clinicians to give to their patients.

“We’re really trying to use every forum to help get the evidence out there.”

The ACRM lobbies politicians and other influencers to further the cause of rehabilitation research and rehabilitation generally.

“We have a policy committee which tries to talk to policymakers in Washington DC. We also work with clinical and patient advocacy groups to help them understand how to fight their case based on evidence. We will advocate for different bills – legislature that impacts not only rehabilitation research, but rehabilitation care if it’s evidence based.

“We do have influence but it’s a marathon, not a sprint and I think we have to continue trying to keep those conversations open and discussions moving forward.

“We definitely have had people at the National Institutes of Health who are very interested in helping to develop the rehabilitation research agenda and supporting the work that we’re doing. Every time we get somebody in our corner, we try to use it to take a step forward.”

Is encouraging consistency of rehab services across the US another of ACRM’s biggest challenges; considering the sheer size of a country which is home to over 6,200 hospitals?

“Our evidence and practice committee is very rigorous in evaluating the research and then helping to develop guidelines to influence tactics. So in that way, we’re trying to improve the consistency across America, but it takes a lot of manpower and resources to develop those guidelines.

“We’re supporting research and then helping it to be carried out in the most rigorous way – and then taking that information and evaluating it to help to develop guidelines.”

Of the rehab research currently underway in the US, which areas particularly excite Deborah? Unsurprisingly given her specialism at the Shepherd Center, she says: “MS rehab and research has advanced tremendously in terms of disease modifying therapies. There’s now an evolving awareness that people with MS can be healthier and more functional.

“In my mind, it’s very meaningful, because these are people that we haven’t previously been able to help live their healthiest lives.

“There’s also a lot of work going on with predictive analytics that I think is very exciting. A lot of people are focused on establishing large data sets and developing predictive analytics, trying to figure out exactly who’s going to benefit from which kind of care.

“Lots of important work is going on trying to advance precision rehab; asking how can we do a better job deciding what to do for a given person based on how they present with their MS, stroke or spinal cord injury, for example. What can we offer them?

“I think we’re starting to see that we need to break down the silos between the different diagnostic groups and to think about each individual based on how they present with impairments.”

Deborah herself is involved in a multi- site trial testing the evidence-based guidelines for exercise in MS.

“We’re evaluating delivery of these guidelines combining social, cognitive theory and behavioural intervention – comparing delivery in the home via tele-rehab and in a facility.

“It’s going to be the largest exercise trial of its kind and is very exciting because every day we’re hearing from people just how meaningful participating in this exercise intervention has been for them.”

The study’s findings are likely to be published in 2021. In the meantime, there is much work to be done at the ACRM, including in growing its global network.

“We’re really keen to expand our reach. We’re currently working on developing partnerships with similar minded organisations around the world. I think we could probably do a better job in terms of global collaboration.

“One of the limitations, whether it’s with Canada, the UK or other places in the world, is that the reimbursement structure and the way services are paid for here is a little different.

“But there is great collaborative work going on to address problems. In the MS world, for example, there are people in America, Ireland, the UK and Canada all working together. There’s definitely that type of collaboration happening in spinal cord too.”

Another focus area for the ACRM is in developing leadership skills in rehabilitation.

“We really want to develop future leaders in rehab research and rehab medicine. A lot of our most prominent and influential people are either in retirement or getting close to it.

“There is a strong need to develop not only our early career researchers but also our mid-career ones, helping them to develop into leaders in the field. We already have a special early career training course that really has had a huge impact already.

“So now we are doing the same scheme for mid and late career people – those ones who get to the stage of saying, ‘Ok I’ve established my research agenda and I’m doing fairly well. Now what can I contribute to the field and what else can I do to advance myself ?

“Policymakers come in and work with them, helping them to do a better job of packaging their research to get the funding they need. It’s just a unique course and very powerful.

“Researchers don’t get a lot of opportunities to develop their skills as leaders. There’s a lot of education out there but it’s not packaged for the researcher and a language of a researcher and the way that they think.

“So we have an opportunity to develop people as leaders, and not just managers. It’s not just about how you do the day-to-day operations, but how do you think in a visionary way? How can you package that research to influence the field and what mechanisms can you use to do that?

“That’s what we’re trying to do because we need those future leaders.”

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Interviews

The man who couldn’t see numbers

The unusual case of a man who can’t see numbers has led researchers to argue that the brain can process things without a person being aware of what they’re looking at.

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Researchers from Johns Hopkins University studied a 60-year-old man known as RFS, who has a rare degenerative brain disease that prevents him from seeing numbers two to nine.

He would describe seeing one of these numbers as a tangle of black lines that changed every time he looked at it. He had otherwise normal vision, and had no problem identifying letters and other symbols.

The problem would happen before he knew which number he was looking at, which meant his brain had to at least know that numbers were in the same category before something could then go wrong; study author Mike McCloskey tells NR Times.

“It didn’t matter how we presented digits to him, they were always distorted,” says McCloskey, a researcher in the Cognitive Science Department at Johns Hopkins University.

The researchers didn’t know what they were looking for when they started working with RFS, as this specific pattern has never been recorded before. The closest recorded cases are of patients who see distorted faces.

The researchers, whose findings were published in the journal, ‘Proceedings of the National Academy of Sciences,’ also found that RFS couldn’t recognise anything placed near or on top of a number.

They recorded RFS’s brainwaves while he looked at a number with a face embedded on it, and found that his brain detected the face, even though he was unaware of it.

“In one experiment, we showed him a big digit with a face on top of it and recorded EEG signals to see how his brain responded to the face.

“Even though he couldn’t see the face at all, we could pick up a response in the brain 170 milliseconds after the face was presented.

“We saw a perfectly normal brain response to the face, which told us his brain unconsciously identified the face as a face, even though he wasn’t aware of it at all.”

In another experiment, they put words next to the numbers and told him a target word. When he saw the target word, his brain had a bigger response even though he said he couldn’t see the word. They also did tests where they placed a number in front of RFS and asked him to guess what a number was, to test implicit knowledge.

“Sometimes, blind people say they can’t see a light, but can often point to it accurately when forced to make a guess,” McCloskey says.

“We did that with him and saw absolutely no indication he had any implicit knowledge. He couldn’t tell us if numbers were the same or different, odd or even – yet the EEG showed his brain was responding.

The reason it could just be numbers that are affected, he says, is because evidence suggests the brain treats categories of things differently.

“Furniture, fruit and vegetables, for example, may be treated separately, so it’s possible for some areas to be affected and some not.”

The findings demonstrated that the complex processing needed to detect words, numbers and other visual stimuli isn’t enough to make a person aware of what they’re seeing.

“We can draw conclusions about what’s necessary for you to be aware of what you’re seeing. You’d think that, if the brain has done enough work on something to know it’s a face or a particular word, you’d be aware of it.

“These results tell us the brain can do an awful lot of processing on something you’re looking at without you being aware of it at all,” McCloskey says.

“Something else needs to happen after the brain has identified what it’s looking at before you become aware of it at all. ”

And the reason these findings apply to everyone else is because the researchers assumed RFS’s brain was the same as anyone else’s, except for this one thing that went wrong.

“In order to become aware of something, you have to do more than processing to allow you to identify what you see – we think this is true for everyone.”

As for RFS, who was a geological engineer, the story has a happy ending.

“Because RFS couldn’t see regular digits, this was a real problem for him. We created a new set of symbols for him for digits, to see if he could use those,” McCloskey says, as well as a calculator on his phone using the digits.

“He learned them very easily – we wondered if they’d get distorted for him but fortunately, they didn’t. He says he’s been using the symbols ever since – he uses them in his daily life and stayed in his job two years longer than he would’ve otherwise, because of them.”

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“Assume brain injury” after domestic violence, researcher urges

Domestic violence survivors in hospital should automatically be tested for traumatic brain injury (TBI) because they, and doctors, may not be aware of the symptoms.

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That is according to researcher Jonathan Lifshitz, director of the Translational Neurotrauma Research Programme at the University of Arizona’s college of medicine.

When a patient goes to the doctor with a cough, they’re tested for numerous diseases to rule them out, but with intimate partner violence (IPV), Lifshitz says, we should “flip the script”.

He tells NR Times: “If the individual doesn’t have encyclopaedic knowledge of what TBI is, they may not offer all the symptoms up to their healthcare provider.”

Similarly, the brain injury itself may prevent the patient from being able to detect their symptoms.

Instead, practitioners should suspect that victims of IPV have a head injury, so they can be tested.

“If we tested all people experiencing intimate partner violence for TBI, and are able to screen them using objective tests, we’re going to have far fewer people who experienced intimate partner violence and go untreated,” he says.

In one study, Lifshitz found that 62 per cent of people subject to IPV and diagnosed with TBI were unaware of their TBI when they sought treatment.

While it’s a challenge to determine that someone has TBI, the risk of missing something, Lifshitz says, is much greater. And while increased testing would incur more cost, due to additional testing, Lifshitz says it would save money.

“An individual may be able to hold down a job better, be less dependent on services and won’t need healthcare services as much in the long run,” he says.

Lifshitz is involved in the Maricopa County Collaboration on Concussion from Domestic Violence (MC3DV), a county-wide collaboration in Arizona. It aims to increase the suspicion of head injury by analysing health data for patterns and problems that can be targeted with a county-wide approach.

It educates police officers to recognise symptoms, social workers to better identify abusive relationships, emergency services to profile forensic evidence and clinical partners to assess and treat symptoms of TBI and concussion.

Also, prosecutors through the Maricopa Country attorney’s office are supported in being able to build their case against the assailant; while scientists and process developers also help to bring everything together.

Meanwhile, social workers and nurses are educated on the signs and symptoms of TBI, proposing an objective measure where head injury is implied.

Hospitals are a key area of focus for MC3DV, where one challenge is rebuilding trust between medical practitioners and patients who have previously suffered discrimination, and as a result have a lack of trust.

“It would be easier to implement this change in one crisis shelter or emergency department, when we have the opportunity to regulate and control the organisation we’re working with and we can put in new policies and procedures,” Lifshitz says.

“When trying to coordinate multiple systems in multiple organisations, it’s much more challenging.

“While everyone is receptive to the topic, the problem is having enough resources to do it.”

MC3DV is also hoping to replicate state-wide efforts made in 2012 to better detect evidence of strangulation.

As a result, Maricopa County prosecutors attributed the rise in domestic violence prosecution and decrease in domestic violence deaths to this change.

“Arizona recently changed the way the legal system deals with strangulation, in terms of how it sees evidence,” Lifshitz says.

“Prosecution is much more rapid and severe; it’s unburdened the legal system because many more cases are starting as guilty.”

Lifshitz hopes better testing and evidence gathering will act as a deterrent for abusers, and provide additional motivation for victims to step forward, although, he concedes, psychological, emotional and financial controls an intimate partner has over their victim complicates this scenario.

“A patient wanting to seek treatment is very different from the ability to seek treatment,” he says.

Lifshitz hopes there will be some real changes to come out of the research programme.

“I’ve always needed a bigger social driving force to keep me motivated. It’s unconscionable to know about this and not do anything about it.

“This programme helps to bridge the gap between social work, police work and biomedical research, to attack this problem from multiple angles.

“The majority of the work we do is stepping back, looking at what healthcare data we might have, and asking very specific questions.

“We sit around the table not necessarily with the smartest people, but with the most passionate people. It’s not any one person doing the work, but relying on a community of providers to support the victims and warn abusers.”

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We’ll be soaring again soon

It’ll take more than a global pandemic to stop Accessible Dreams drawing up plans for more empowering trips in the not-too-distant future, as NR Times reports.

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Two of the most powerful ingredients of Accessible Dreams’ work are the very things that are restricted right now.

Travelling to exciting horizons, and being able to hang out with friends new and old once there, are at the heart of the experiences the group creates.

And at the time of writing, one is currently impossible from the UK, while the other is enabled only in a world of separation, screens and clever apps.

But Nicola Cale, who runs Accessible Dreams, sounds surprisingly chipper when NR Times calls her.

Partly, she’s been bowled over by the enthusiasm and ingenuity shown by people in the group’s vast social ecosystem in staying connected and supporting each other.

But also, it’s given her a chance to reflect on the importance of the organisation’s work – and she can’t wait to help more clients onto the adventure trail with renewed vigour soon.

Accessible Dreams welcomes people with serious injuries and often complex disabilities into life-changing overseas experiences, like skiing, surfing and safaris.

Many individuals it works with would otherwise have given up on the possibility of such adventures because of the challenges created by their condition or injury. In reversing this, magical things can happen.

Nicola, who runs the organisation alongside fellow director William Sargent, says: “Going out and being in a different environment stimulates the brain differently. Being on the mountains, for example, already changes your outlook, so if you have a brain injury or disability and your world’s become a lot smaller, to change your environment is really important.

“So too are the opportunities to socialise with others in a group which looks beyond disability.

“Making friends with other people who may be struggling with different challenges in life can be empowering and help clients to better deal with their own difficulties.”

​Through its annual trips, Accessible Dreams enables people to rediscover, or even discover for the first time, the social benefits of group travel and exploring the world alongside the challenge of the physical activity.

“The main thinking behind it is to show them that life can be good again. While a person might not be able to ski or surf in the same way they used to, we want to help them discover they can still do it.

“We’re not focusing on disability, we’re looking at what we can do, what can be possible. We want to show people that their dream is accessible and make adventures which are often assumed to be beyond reach become reality.”

Coronavirus travel restrictions unfortunately led to the group’s annual safari trip being postponed, although Nicola is hoping surfing can still take place later in
the year.

And, with skiing still scheduled for February and March 2021, planning and the search for new opportunities behind the scenes is in full flow.

The three services offered by Accessible Dreams – organised trips, helping people to plan their own holiday and supplying a crew member ‘chaperone’ to join a holiday – are still proving as in-demand as ever.

Despite all future travel being clouded in uncertainty, Nicola believes the current enforced isolation has only galvanised people in their desire to see more of the world.

“I have a theory, I can’t prove it, but it’s a theory of mine, that good brain chemistry can build new neural pathways. If you’re stressed and your daily routine
is the same all the time, you’re not making new connections in your brain, whereas if you’re going out doing new things, your senses are heightened.

“So it’s important that we continue to focus on that huge difference travelling can make and look to the future to get our plans back on track for later this year and next year onwards.

“Taking people on holiday, or using our resources and connections to help is absolutely something to look forward to and be excited about.”

Over the course of the many trips organised so far, Nicole has witnessed a steady stream of success stories from people who have fulfilled personal dreams, while changing their outlook on life.

On the most recent skiing trip, which saw 66 people visiting a French ski resort, a man who suffered a brain injury several years ago, which left him with very limited powers of communication, went skiing for the first time since his injury.

That huge achievement was compounded by the fact his support worker and friend was also able to join him.

“This particular guy used to be in the Army and we knew he was an adrenaline junkie before his brain injury.

“So we arranged for him to ski down the mountain in a sit ski. We found out that his support worker used to be in the military with him, so we arranged for him to go in a sit ski too.

“That was a special moment. It’s a cliché but you could see him light up, he was visibly brighter in his eyes, and also more upbeat afterwards.

“We also have a blind man who has now been on four ski trips with us and has learned to ski standing up. It’s incredible that he’s learned this new skill.

“That feeling of exhilaration, the speed and perception of danger – even though in reality it’s the safest it could be – has a really special impact on people.”

While the trips are primarily for the benefit of the person with the serious injury or disability, they can be equally important for family members and support workers too, says Nicola.

“You can see sometimes they’re a bit nervous about going on trips, so that’s why we offer the range of services we do, either arranging the holiday, helping to arrange someone’s own holiday, or having someone to send with you.

“Seeing a loved one being able to ski or surf and seeing the difference that makes to them, can be very emotional.

“I had one lady recently tell me that going on one of our trips with her son helped her to let go a little bit as a mother and to realise that people really did care – and that it was OK for her to take a step back. I thought that was brilliant.

“Her son also said about travelling as a group, ‘We went as strangers and came back as friends’ and that’s exactly what we want to achieve.

“We see it as building a community of people who have mutual experiences and common loves, and we have set up a WhatsApp group for people who are travelling so they can keep in touch afterwards. That’s been a really nice more recent addition to what we do.”

Each trip organised by Accessible Dreams is meticulously planned according to the bespoke needs of the participants.

“We want to take people to places that are unusual and appealing, but on a practical level, we make sure that whichever adventure we go on, there is a great hospital or medical centre nearby, and of course make sure the resort we go to meets our needs exactly.

“The ski resort in France we visit now knows us. They’ve got great resources, but we’ve also made sure their ski instructors are clued up on brain injury and have taught them about brain injury awareness.

“Also, we add in other aspects which are tailored for the group, such as having a rest day after a travel day.

“These are the sorts of things that package holidays don’t really factor in. So we might make a holiday for ten days instead of seven to allow some extra time getting over fatigue.”

Plans are also underway for trips, including those within the UK, that provide a more relaxing alternative to adrenaline-packed holidays.

Nicola is also hoping to arrange high-octane day trips as soon as the COVID-19 restrictions are lifted.

“If someone wanted to do a skydive, for example, we could look at that.

“There are also opportunities for cycling or walking holidays closer to home and we’ve got links to some adapted properties in the UK which could help with that.

“Also, we ran a fantastic ‘sensation’ vacation to France, with some alternative therapists joining us.

“We had good food, aromatic essential oils and all kinds of other things that indulged the senses of taste, touch and smell. That’s something we could look at doing in the UK once we’re allowed to move around again.”

Accessible Dreams has long been in the business of overcoming seemingly unscalable barriers. It looks like the current crisis will be just another challenge it rises to and ultimately leaves for dust on the road to another adventure.

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