From research studies to life-enhancing apps, patients and community members serve as the catalyst for Shepherd Center’s clinical and technology innovation initiatives.
Like Shepherd Center itself, innovation can spark optimism, hope and even curiosity. While often associated with flashy technology or gadgets, innovation can also be very practical, guided by the desire to fulfill an unmet need.
“Our ‘why’ has been clear from the start,” says Mike Jones, Ph.D., FACRM, who recently retired as vice president of research and technology after 25 years at Shepherd Center. “We focus on improving clinical outcomes and quality of life for our patients with disabilities. At the end of the day, impressive technology and clinical trials are only meaningful if they have practical, sustainable applications for the people we serve.”
Shepherd Center’s research efforts began in 1982 with funding of the Southeastern Spinal Cord Injury Model System, which continues to this day. In 1996, the Virginia C. Crawford Research Institute was founded with the aim of broadening Shepherd’s research program and supporting the integration of research into clinical practice. During the past 25 years, researchers and clinicians at Shepherd Center have participated in many studies and clinical trials that have changed the care landscape for people with spinal cord injury, brain injury, stroke, multiple sclerosis, and spine and chronic pain. Today, Shepherd Center’s research and innovation initiatives focus on therapy augmentation, assistive technology, big data and partnerships.
BOOSTING THE SIGNAL: THERAPY AUGMENTATION
Anyone who has been through rehabilitation for spinal cord injury (SCI), brain injury or a neurological condition, such as multiple sclerosis (MS), will tell you it is hard work. There are physical challenges in occupational therapy, physical therapy and speech therapy sessions and unseen psychological hurdles. While a person’s dedication to old-fashioned hard work is necessary to experience progress, there are specific ways to enhance – or augment – conventional therapies to produce even greater results.
That’s what Edelle Field-Fote, PT, Ph.D., FAPTA, FASIA, director of spinal cord injury (SCI) research and the Hulse Spinal Cord Injury Lab at Shepherd Center, is hoping to accomplish as co-principal investigator in the Up-LIFT clinical study, a multi-center clinical trial of cervical spinal stimulation using ARC Therapy™. Sponsored by the medical technology company ONWARD (formerly GTX Medical), the Up-LIFT trial aims to restore hand and arm function in people with SCI who have minimal ability to move their hands. Shepherd Center enrolled the first participant in the study in January 2021.
Here’s how it works: A spinal cord injury disrupts the transmission of signals from the brain that activate the muscles someone wants to move. In most people with SCI, there are still some remaining spinal pathways, but the damage to the spinal cord means that only a fraction of the signals get through. The result is limited ability to move. The goal of spinal stimulation with ONWARD’s ARC Therapy™ is to “boost” the signal transmission so that more of it reaches the areas of the spinal cord that activate the muscles. The research team hopes to show this technology improves movement and strength in the hands and upper extremities of people with SCI when combined with daily functional task practice training.
“For individuals with impaired arm and hand function due to spinal cord injury, improved hand function directly translates into meaningful gains in terms of quality of life – being able to eat, dress and perform other day-to-day activities,” Dr. Field-Fote says.
Shepherd Center plans to recruit at least eight participants in this clinical trial. This trial is registered on clinicaltrials.gov (#NCT04697472). Click here for more information and to be considered for participation.
TECH THAT HELPS: ASSISTIVE TECHNOLOGY
Ranging from low-tech to high-tech with a wide variety of applications, assistive technology is any item, equipment, software or product used to increase, maintain or improve the functional capabilities of people with disabilities. Shepherd Center’s Assistive Technology Center focuses on addressing these needs.
“A lot of times, new assistive technology innovations come out of one person solving for one specific need,” says Chris Maurer, MPT, ATP, program manager of Shepherd Center’s Assistive Technology Center. “At Shepherd, our diverse patient population allows us to test these innovations and offer feedback so we can see how a piece of technology can apply to more people who may benefit from it.”
This was certainly the case for the LUCI™ autonomous driving system for power wheelchairs. Inspired by his daughter who was born with cerebral palsy, Grammy-nominated songwriter Barry Dean wanted to create a smart wheelchair that could prevent tips, collisions and falls. Barry and his brother, Jered, partnered to develop LUCI, a system of cloud-connected software and hardware mounted to a wheelchair that uses sensors to detect potential dangers in the environment. Last year, they approached experts at Shepherd Center to test it.
“So often, typical research remains theoretical, focusing on the narrowest data sets,” Dean says. “Shepherd Center gave us the opposite – and much more valuable – view. Their expert team examined our new technology and tested it with their patients. There was immediate and direct feedback, and this incredible team allowed us as a company to observe reactions to our new product in real time.”
That direct feedback inspired the LUCI team to completely redesign the mobile app used to set up the technology on a wheelchair, making the technology more accessible. Now, they are working to build their distribution network to make LUCI available to more people who may need it. You can learn more about LUCI at luci.com.
In 2018, Matt Kubota’s loved one was referred to Shepherd Center after being diagnosed with Guillain Barré syndrome (GBS). Anastasia Soule was temporarily non-verbal and lacked motor function, making it difficult for Matt to effectively and affordably communicate with her. Fortunately, Matt is a software designer and decided to create a free mobile communications app called Vocable with help from others at his company. The app uses built-in technology to track the user’s head movements. When the user stops moving their head, the item on the screen is selected. The app features pre-programmed phrases that speak when selected so the patient can communicate with caregivers and loved ones.
After Anastasia was discharged, Matt contacted Adina Bradshaw, MS, CCC-SLP, ATP, a speech-language pathologist in the Assistive Technology Center, for help testing and developing this new idea.
“Adina offered her expertise to us to improve the app,” Matt says. “She was one of the people who tested the beta version. We worked with her to understand the ideal use cases for an app like this, how we could improve the phrases users can select from and more.”
To date, the app has more than 4,000 downloads and is used in 49 countries. Matt and his team have kept the app free and open source so anybody can access the code and adapt it to their specific use cases.
“At Shepherd Center, we regularly use Vocable with our patients,” Bradshaw says. “It’s made an incredible impact on them.”
Shepherd Center also produces assistive technology through its collaboration with Duke University and Northeastern University called the LiveWell Rehabilitation Engineering Research Center (RERC). The LiveWell RERC promotes access to existing and emerging technologies for all people, regardless of ability, through various research and development projects. A key project is the App Factory, a technology development initiative started in 2011 and pioneered under the Wireless RERC grant by Dr. Jones. It brings together rehabilitation experts and app developers with people living with disabilities at the center of all efforts. To date, the App Factory has funded or directly produced 46 mobile apps which have generated nearly 1 million downloads.
“With the advent of the iPhone and other smart devices that followed, we now have platforms to support mobile apps, and it’s opened tremendous opportunities for our patients and others with disabilities,” Dr. Jones says. “But amid the explosive growth of mobile healthcare apps, technologies must evolve and/or be adapted so that people with disabilities can use them.”
One example is SwapMyMood, a free app that assists people with brain injury in using evidence-based tools to support problem-solving and emotion regulation. Clinicians can use it to guide patients through recognizing when they have a problem, what caused it, and how to resolve the issue and cope with their emotions in a thoughtful, constructive way.
SwapMyMood was born out of Shepherd Center’s SHARE Military Initiative, a comprehensive rehabilitation program focusing on assessment and treatment for service members who have served in the U.S. military since September 11, 2001, regardless of discharge status.
“We traditionally teach these problem-solving and emotion regulation techniques from a paper manual, but it occurred to me that it might be more effective if we could provide an electronic version that our SHARE clients could use no matter where they are,” says Tracey Wallace, MS, CCC-SLP, the SHARE Military Initiative’s projects and education coordinator.
Wallace teamed up with John Morris, Ph.D., FACRM, a senior clinical research scientist at Shepherd Center, in 2016 to create the app. They received positive feedback from SHARE clients. Like all technology, the app is continually evolving, and developers released the latest version in spring 2020. The team plans to launch a clinical trial comparing the outcomes from clients who use only the paper manual version with outcomes from clients who use only the app. The results will inform how the app will evolve to help those who need it.
KNOWLEDGE IS POWER: BIG DATA
Big data may sound like an intimidating concept, but when it’s boiled down, it refers to large, diverse sets of information that are too complex to manage and process in traditional ways. For example, think of all the information you store each day in your smartphone, like photos, texts, web searches, social media interactions and more. Now, multiply that by the more than 2.8 billion smartphone users in the world, and your head may start spinning. This is what the tech industry refers to as big data.
“Big data can have a huge impact on healthcare and patient quality of life,” Dr. Jones says. “Shepherd Center has about 23 years of electronic medical record data that is nearly impossible to analyze manually. Thanks to big data analytics, we have a much more efficient way to dig into that information to help reveal which interventions and treatments are most effective for our patients.”
At Shepherd Center, big data is making an impact through the concept of mobile rehabilitation (mRehab). That concept involves the delivery of services and support for home-based rehabilitation using mobile apps, sensor-based activity tracking and gamified exercises. The goal of mRehab is two-fold: keep patients interested in their therapy so they continue training at home and provide a low-cost, accessible way for people to continue rehabilitation once they leave the clinic.
Dr. Jones’ extensive work with wireless technology helped him realize mobile devices generate vast sets of clinically valuable data. For example, data can reveal whether people stick to their at-home rehabilitation plan and what motivates them to stay consistent. He recruited George Collier, Ph.D., as a Shepherd Center senior data scientist tasked with creating a big data system to handle the amount of information recorded by patients using apps and sensor technology to track their therapy.
Dr. Collier works with Raeda Anderson, Ph.D., a research scientist at Shepherd Center, and a team of collaborators at the University of California, Irvine, including David Reinkensmeyer, Ph.D., Edgar de Jesus Ramos Munoz, Ph.D., and Veronica Swanson, to explore factors that determine whether people continue their rehabilitation exercises at home and when they are likely to drop off.
“Clinicians can use the results from this data analysis to makes mRehab more engaging and adjust the programs accordingly,” Dr. Collier explains. “That way, the users are more likely to participate and stay as healthy as possible once they leave Shepherd Center.”
This work is funded by a $4.25 million, five-year grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to help advance the mRehab field and test how clinicians can embed these technologies into practice. Two of the key collaborators in implementing mRehab are Pt Pal and Flint Rehab.
Pt Pal is a HIPAA-compliant, secure app that allows a patient’s care team to send exercise routines, activities of daily living, diet recommendations, surveys and educational materials to the patient’s or caregiver’s mobile device. Clinicians use data collected from the app to monitor patients’ adherence to treatment regimens.
Flint Rehab is a digital health company that develops rehabilitation tools using the latest clinical research and gamification. Two of their popular products are fitness games that use sensors that track users’ movements and help them regain mobility and function with real-time feedback.
The team is working to integrate the Pt Pal app with Flint Rehab’s sensor technology so the app can store sensor data while patients exercise at home and in clinic. This information provides a clearer picture of the patient’s lifestyle and motivation, allowing clinicians to determine the best treatment plan for each individual. So far, Shepherd Center has accumulated one year’s worth of Pt Pal app data from patients, resulting in a data set of about 4.8 million observations. They have also begun collecting information from the Flint Rehab sensor devices.
“What happens in the clinic is important, but the data from these mobile devices will give us a window into what happens after the patient returns home to their community,” Dr. Collier says. “That’s what is really telling about someone’s long-term success. With this wealth of information, we hope to personalize at-home rehabilitation to make that success even more achievable.”
INNOVATING THROUGH CONNECTIONS: PARTNERSHIPS
Sharing knowledge is a cornerstone of making progress, which is why Shepherd Center has more than 200 industry and academic partnerships to advance research and innovation.
“We have to share knowledge, energy and resources with our partners to maximize the impact we can have for our patients and all people with disabilities,” Dr. Morris says.
One such partnership began between Microsoft and Shepherd Center in 2017. It is the Accessibility User Research Collective (AURC), which connects Microsoft product engineering teams directly with people with disabilities. Microsoft partnered with Shepherd Center for its expertise in accessibility and usability testing, as well as rehabilitation research in areas like assistive technology. AURC staff at Shepherd Center design study protocols, recruit research participants, and collect and analyze data to ensure that ongoing product development at Microsoft meets the needs of people with disabilities.
“By working with the Shepherd Center AURC, we have built a scalable system that brings the voice of people with disabilities into our company, helps us better understand how they use our products and provides feedback to engineers to make our tools more accessible,” says Megan Lawrence, Ph.D., Microsoft senior accessibility evangelist.
Since AURC’s inception, Shepherd Center and Microsoft have completed more than 75 usability and user-needs research projects to make Microsoft’s consumer technologies more accessible and useful. There are about 1,000 participants in the studies selected based on the type of disability they have to test specific features of Microsoft’s products.
“A lot of times, research and innovative ideas can take a long time to go to market,” says Nicole Thompson, MPH, director of operations for the Accessibility User Research Collective (AURC) at Shepherd Center. “The beauty of this type of data collection model is that we can gather consumers’ feedback and implement their suggestions quickly in order to match the needs of the fast-paced technology sector.”
To learn more about the AURC, visit accessibilityuserresearchcollective.org and sign up to join.
Shepherd Center Welcomes a New Vice President of Research and Innovation
Deborah Backus, PT, Ph.D., FACRM, assumed the new role of vice president of research and innovation on March 1. Dr. Backus began her career at Shepherd Center in 1989 as a physical therapist. Through her tenure, she has demonstrated strong collaborative skills and the ability to deliver innovative solutions to meet patient care needs, most recently as director of multiple sclerosis research. In her new role, Dr. Backus will expand Shepherd Center’s existing programs to ensure the hospital continues to be at the forefront of treatment and technological advances.
“Dr. Backus’ passion, dedication and hard work perfectly position her to be successful in this new role,” says Sarah Morrison, PT, MBA, MHA, president and CEO of Shepherd Center. “Through her leadership, we will continue to transform patient care for years to come.”
Dr. Backus assumed the role following Michael L. Jones, Ph.D., FACRM, who is retiring as vice president of research and technology after a distinguished 25-year career with the hospital, yet will continue participating in research at Shepherd Center in other capacities.
His contributions have been immeasurable. In addition to serving as a founding director of the Center’s Virginia C. Crawford Research Institute, he oversaw Shepherd’s Assistive Technology Center and Noble Learning Resource Center. After joining Shepherd Center in 1996, Dr. Jones served in various management roles, including chair of the Research Review Committee, ex-officio member of the Board of Directors and director of information systems from 2000-2017.
“Dr. Jones and his team’s impact have transformed Shepherd Center over the past 25 years,” Morrison says. “Shepherd Center patient programs like our successful Beyond Therapy® outpatient program started as research projects. We have Dr. Jones’ leadership to thank for that.”
Written by Damjana Alverson
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.