Leading the Conversation on Aphasia: Centering Patient Experiences in Research
Sargent College’s Speech, Language & Hearing Sciences department is currently at the forefront of aphasia research, working with the National Aphasia Association (NAA) to identify what matters most to people living with aphasia and to the people who support them.
The project, titled “Building Capacity for Patient-Centered Clinical Effectiveness Research in Stroke-Related Aphasia,” looks to formalize the first ever Patient Centered Core Impact Set (PC-CIS) for aphasia in the United States, which would establish a clear set of research priorities for further aphasia research. Following the National Health Council’s PC-CIS framework, the core impact set will identify and prioritize the impacts of aphasia that patients, families, healthcare providers, and other members of the care network believe should be considered in research, clinical practice, and more. The impacts can range from cognitive changes to daily struggles, taking a broader view of how the condition affects people’s everyday lives.
Sargent College’s Speech, Language & Hearing Sciences department has a deep rooted history in aphasia research. It is home to the longest-running aphasia support group in the country, the Aphasia Resource Center, with an established network of aphasia research centers. Headed by Dr. Swathi Kiran and organized by PhD student Madeline Dunne, the project connects over 150 diverse participants to a mission to continue meaningful aphasia research. Using purposive participant sampling, the project aims to reflect the demographics of stroke and aphasia in the US, with an emphasis on sociodemographics, geographic location, and other factors.
“How can we engage and talk to patients, family members, healthcare providers, to define what matters most?” asks graduate student Madeline Dunne. “It really spans beyond ‘just’ communication. We’re taking into account treatment experiences and quality of life, things that aren’t typically examined.”
While aphasia is a language disorder, Madeline describes how participants have stated everything from interpersonal relationship changes, loss of income, and difficulty navigating healthcare, as some of the concerns of patients and care networks.
The project began by gathering a broad range of potential impacts through an environmental scan. Participants took part in focus groups and open discussions where they could describe their experiences and identify the aspects of aphasia that mattered most to them. Then, surveys where participants were asked to quantify the importance of an impact helped researchers determine which impacts are more consistently prioritized and relevant to day-to-day life.
This would be the first ever impact set to be done about aphasia, making it even more important to represent a diverse variety of concerns. In addition to facilitating existing connections between aphasia research centers, the National Aphasia Center and Center for Brain Recovery have also been making an effort to create new relationships with patients who might not know of or have access to universities or research centers. The project involved a Leadership Team and Advisory Board comprised of people with aphasia, family members, and clinicians in co-designing and surveying, selected to best represent aphasia patient demographics.
By combining patient narratives with quantitative measures, the project aims to shift the focus of aphasia research toward a more complete understanding of the condition—one that recognizes communication as only one part of living with aphasia.
“What I find most exciting about this work is that it’s truly ‘patient-centered.’ We bring a blank slate to participants, and they fill it with their experiences, beliefs, and perspectives. Our job is to merely organize it and ensure our participants’ voices are shared and heard. This is a unique chance for people with aphasia and their care networks to truly lead the conversation on what matters most to them and be a part of the research process every step of the way. We really hope this project brings more awareness to aphasia and impacts, not just outcomes, and will shape the future of patient-centered research and programming,” says Dunne.
Story by Jieun Paik