Dartmouth-led Research Team Receives $13 Million PCORI Funding Award to Test the Impact of Video on Visit Communication for People with ALS
A dual-principal investigator (PI) research group led by Dartmouth and the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, and seven other institutions across the U.S. serving as sites for the project, have received a five-year, $13 million funding award from the Patient-Centered Outcomes Research Institute (PCORI). Their project will test the effectiveness of video as a communication tool during patient visits for people living with Amyotrophic Lateral Sclerosis (ALS) and their caregivers.
PCORI is an independent, non-profit organization authorized by Congress in 2010 with the mission of funding research that will provide patients, their caregiver’s, and clinicians with the evidence-based information they need to make better-informed healthcare decisions.
Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, is a progressive and fatal neurodegenerative disease affecting about 30,000 people in the United States and an estimated 450,000 people around the world. ALS progresses rapidly, with most patients experiencing significant decline within 2-5 years.
While there is no cure for ALS, medications and therapies have been shown to help manage symptoms and slow the progression of the disease. But this can be an incredibly burdensome process for patients and their caregivers.
“The gold standard of care for ALS has been quarterly multidisciplinary clinic visits for patients and caregivers that last 3-5 hours and involve 10-12 clinicians—including a neurologist, pulmonologist, speech, physical, and occupational therapists, dietician, and social worker—all giving detailed instructions on how to manage their illness and symptoms,” explains Paul Barr, PhD, MSc, an associate professor of The Dartmouth Institute for Health Policy & Clinical Practice and Center for Technology & Behavioral Health at the Geisel School of Medicine and dual-PI on the project.
“Patients and caregivers are given summaries of their visits, but the treatment sessions can be complicated and the details hard for them to remember, especially once they’re back home, where most of the care takes place,” Barr says. “We thought that doing video recordings of the visits, where the caregiver and the patient could watch themselves with their therapists, doing treatments exactly as they’d been shown in the clinic, could be very helpful.”
“I’m incredibly excited about this project’s potential to directly impact the implementation of multidisciplinary care and improve the lives of people living with ALS,” says Suma Babu, MBBS, MPH, dual-PI of the project. Dr. Babu is an ALS physician investigator at the Sean M. Healy & AMG Center for ALS at MGH and co-director of the MGH Neurological Clinical Research Institute.
Barr and his colleagues first tested the idea back in 2018, as part of his Open Recordings research group, in a pilot study funded by the Dartmouth Hitchcock Diamond Endowment. “As part of that trial, we enrolled and randomized 24 patients to receive either video recording or usual care,” says Reed Bratches, PhD, who ran the trial as part of his PhD work under the mentorship of Barr.
“The trial was a great success. Patients and caregivers really appreciated having the recordings with some saying they felt more present during the visits knowing they were able to play back what was said later on,” adds Bratches, who is now an assistant professor at the University of Alabama’s School of Nursing and part of the leadership team on the current project. The leadership team also consists of Zachary Simmons, MD, from Penn State University, and Dartmouth researchers Renata Yen, PhD, James O’Malley, PhD, and Mark Garret, MD.
For their study, the project team will recruit 50 people living with ALS and their primary care partners at each of the eight collaborating sites (800 total participants): Dartmouth, Harvard/MGH, Penn State University, Virginia Commonwealth University, University of Wisconsin-Madison, University of Pittsburgh, University of Alabama Birmingham, and Mayo Clinics in Jacksonville, FL and Phoenix, AZ. Sites were recruited from the Northeast ALS Consortium (NEALS), a non-profit organization dedicated to rapidly translating scientific advances into clinical research and new treatments for people living with ALS with over 150 research sites across the country.
“We’ll be exploring what’s truly the added value of the video recording sessions and sharing them with the participants over the course of 12 months,” says Barr. “We’ll be able to record each of those, break them into chapters per specialist that they meet with, and then for those randomized into the video arm, they can review those chapters on their own time, at home.
“For the people in the ‘Notes’ arm, we’re going to give them training on how best to access and use their visit notes on their patient portal,” he says. “While we were very encouraged by the results of the pilot study, we do want to monitor all of the potential benefits as well as any potential harms that can come.”
Importantly, in addition to utilizing the expertise of scientists and clinical teams, the project will rely on the experiences of patients and caregivers in helping to guide its research efforts.
“I’ve always been one of those people who prefers not to stay in the background, so if there’s an opportunity to participate in this type of research and there’s even a small chance it can help down the road, we want to be a part of it,” says Dave Garland, an ALS patient whose wife Deb is his care partner.
“We’re fortunate enough to be able to participate in several different things, including a drug trial Dave is on, while he is still relatively healthy,” says Deb Garland. “It gives us pleasure to help wherever we feel we can move the needle forward to advance care and support for people living with ALS.”
Barr also shared his family’s experience that drives his passion for this work. “My uncle Jim died a few years back from a related disease,” he says. “Watching my younger cousins and family in Ireland work around the clock for six years supporting him as he gradually lost his ability to move and communicate, emphasized just how much support patients and families need.”
This study was selected through PCORI’s highly competitive review process in which patients, caregivers, and other stakeholders join scientists to evaluate proposals. Note that this award has been approved pending completion of PCORI’s business and programmatic review and issuance of a formal award contract.
Founded in 1797, the Geisel School of Medicine at Dartmouth strives to improve the lives of the communities it serves through excellence in learning, discovery, and healing. The Geisel School of Medicine is renowned for its leadership in medical education, healthcare policy and delivery science, biomedical research, global health, and in creating innovations that improve lives worldwide. As one of America’s leading medical schools, Dartmouth’s Geisel School of Medicine is committed to training new generations of diverse leaders who will help solve our most vexing challenges in healthcare.
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