Hope After Disability – With Dr. Pamela Duncan
An interesting phenomenon occurs when someone mentions Dr. Pamela Duncan – people immediately smile and reflect on how she has shaped stroke recovery and their life, whether they know her or not. Throughout her career, she has broken barriers, both as a woman and as a researcher. In 2020, she was the first woman to receive the American Stroke Association’s David G. Sherman Lifetime Achievement Award. As a scholar, she continues to investigate the effects of movement and stimulation on medically frail patients including acute stroke survivors and individuals with severe congestive heart failure.
When discussing the future of stroke recovery, Dr. Duncan motivates the current and next generation to think and dream bigger – never accepting the current standard of treatment and believing that life without disability is possible. In order to live in a world without disability, Dr. Duncan emphasizes the importance of doing more–learning more, creating more, and taking on more challenges and risks. Dr. Duncan acknowledges that there are always challenges with clinical trials, but if a team is passionate about the project and believes in the mission, then it's contagious and the goal will be reached.
Here Are Some Highlights From Our Conversation
As a Major Contributor to the World of Stroke Recovery, What Has Been the Highlight of Your Career So Far?
The highlight of my career is seeing that we are moving forward, both in terms of science and the ability to deliver rehabilitation intervention. I have been both an advocate for and contributor to the science of the idea of full recovery after a stroke. I feel as though I have created a foundation for the next generation to push the field forward in an accelerated fashion, and honestly–the needs for advancement in stroke recovery are greater than ever.
What Motivates You to Advance Ideas in Stroke Recovery?
We are all motivated by our experiences and our own families. I watched my mother have a stroke and she did not manage her recovery or secondary prevention well, which led her to succumb at a relatively early age to a second stroke. This experience motivated me to work with health systems, the American Heart Association and American Stroke Association to demonstrate the need for intervention and care immediately after stroke and beyond. Acute stroke treatment has advanced with interventions like thrombolysis and thrombectomy, but it is not enough. We must provide better intervention and treatment for both stroke prevention and facilitate stroke recovery.
I’ve also been on the frontlines of healthcare, and our patients say it best–we (stroke survivors) get life flighted in and then parachuted out with a hole in our parachute. This tells me that we are failing at delivering care to promote full recovery. I have surveyed comprehensive stroke centers on if they follow stroke patients after 90 days on their progressions and functional outcomes, and only individuals that have received tPA or thrombectomy are even queried on their outcomes. Many patients are discharged from the hospital systems with disability (both severe and mild) and they are left to their own ability to navigate the outpatient healthcare system and acquire their own resources to promote recovery. Within hospital systems, we do not know how well stroke survivors are doing for the majority of our patients, and this has to change.
Tell Me About an Experience With a Patient That Inspired You to Go Into Research
I had a patient that had significant brain lesions and received excellent care within the acute setting, but then they were discharged with minimal resources, despite having residual disability and functional limitations. This influenced their ability to return to work and their family dynamics. What’s interesting is this patient had a relatively high function, in comparison to other individuals with brain dysfunction. This patient was able to advocate for extended intervention and was able to make a full recovery, but if he did not do this, his ability to return to his life would have been different.
Stroke is a major event and the recovery is protracted and long, but patients can recover. As healthcare professionals, we need to ensure that recovery is possible for everyone.
What’s Your View on the Care That Stroke Survivors Receive?
Individuals need access to high-quality care–this is critical. It’s imperative that we improve access to interventions, both medical and therapeutic, and increase the delivery of secondary prevention.
We have already transformed the acute care setting, as individuals have access to thrombolysis and thrombectomy. We now need to shift our attention to the sub-acute window and post-acute care. We need to create and implement interventions that have yielded recovery. This is a catalyst for both access and future research
What Is One Message That You Would Like to Share With Stroke Survivors or Their Families?
Stroke is a life-changing event and the majority of people do not understand the healthcare system or the importance of assessments and continued intervention.
People need to understand that after a stroke, the acute care hospital system is already planning for discharge to the next setting, and many individuals do not know the differences between an inpatient rehabilitation setting, a skilled nursing facility, or a long-term acute care facility. Understanding how intervention delivery changes across these settings will empower the patient and their family to make an informed decision on which location is best for them. Additionally, patients and families need to understand that there are certifications and different programs in specific settings, which may improve the quality of care they are receiving. Medicare and Medicaid also have a rating system that many people are not aware of before they are discharged.
Stroke survivors and their loved ones need to know that they must be advocates for their recovery journey. In order to receive the highest quality care and the most appropriate care, they need both cognitive and motor assessments at discharge from the acute setting and at various time points thereafter. Additionally, they need to identify different resources that may be available to them including outpatient programs, home health services, and community programs. Overall, they need to be empowered to be in control of their recovery and have the resources to prevent secondary insults related to stroke.
What Is Your Advice to Current Healthcare Professionals on the Frontlines?
Healthcare professionals are in a unique position to advocate for their patients and promote a successful recovery after a stroke. It is their (healthcare professionals) responsibility to increase access to resources for stroke survivors after discharge and educate the stroke survivor and family on the importance of being an advocate for continued care during their recovery journey.
Healthcare professionals also must be aware of cutting-edge interventions and recommendations that promote stroke recovery, and implement these strategies whenever possible. Research drives the field forward.
We have not had extensive recovery trials and we have not developed rehabilitation networks to bring the best methodologies, science, and clinical interventions to the acute and subacute settings (in the United States). It is imperative that we embrace research and be partners in research, so we can facilitate recovery after stroke. If we do this, we can be transformative–impacting both the patient and the healthcare system.
Let’s Talk About the EMAGINE Trial. What Is Your Vision for Stroke Recovery and How Do You Think Brainq Will Influence This?
I think the importance of the EMAGINE study is that this is a bold endeavor. In the past, we have done a lot of trials in the chronic phase of stroke recovery; despite knowing that the most rapid and significant change occurs in the acute and sub-acute window. As a community, we have been reluctant to introduce trials in the phase where we have the most potential to influence the recovery, as there are innate challenges including–patient stability and navigating the environment. BrainQ has recruited the top rehabilitation hospitals in the United States and has rallied them together to test interventions within the acute and subacute windows, and potentially optimize neuroplasticity. Another bold challenge that BrainQ has taken on, that most studies avoid, is combining neuromodulation with therapy intervention. Pre-clinical models demonstrate the importance of engaging and practicing movements to create the most change, yet studies to date have rarely done this within the subacute window. BrainQ has taken this chance and I believe that combining therapy with neuromodulation is a wonderful asset, as it increases the probability that it (neuromodulation) will be successful.
What Made You Involved in This Study?
I have led many clinical trials and this is a very big responsibility and job. And there are many aspects of leadership in clinical trials that are time-consuming and demanding. At this point in my career, I wasn’t looking to take on another trial, but when I saw the innovation in this study and the steering committee team, who are the leading stroke researchers and clinicians in the world, (Natan Bornstein, Steve Cramer, Jeff Saver, and Joel Stein). Bringing acute neurologists and individuals involved in neuro recovery together gives me hope that we can bridge the gap between the acute and chronic phases, and optimize recovery within the subacute window. The pilot data that EMAGINE is based on is very promising and the leading researchers and clinicians in the world are involved in this study, which makes me willing to do the hard work. I truly believe that we need to bring innovative interventions that enhance stroke recovery to create hope for stroke survivors.
What Excites You the Most About the EMAGINE Trial?
I love collaborating with stellar researchers, but I have the unique ability to collaborate and lead the next generation of researchers. I believe that this mentorship will allow younger researchers to think about the next question and continue to push recovery further.
In December of 2020, I started approaching top rehabilitation hospitals about the EMAGINE trial and all of them wanted to partner with BrainQ because of their innovation and goal of promoting recovery after stroke. The sites and leadership within the sites are incredible, which is rewarding and likely allows the trial to be executed seamlessly–pathing the way for more innovative trials within the sub-acute window.
What Is One Message That You Want to Share With Patients That Are Interested in EMAGINE?
I want to thank patients for being interested in participating in this innovative trial. We cannot guarantee a benefit from being a participant, but their involvement drives innovation. If this trial is successful, they (the participants) will be responsible for influencing the lives of future stroke survivors in a very positive way.