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 f
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.
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.”