Putting the Patients First in Brain Fog Research
Hayley Shasteen (she/her) is a Kent State University alumna who graduated with a degree in Psychology in 2021. She currently works as a science writer for BioSpace and has been accepted into the Ph.D. program in the Biobehavioral Health Department at The Pennsylvania State University. Her primary research focus is on helping patients with systemic lupus erythematosus by defining the brain fog caused by this condition.
Cognition in lupus patients fluctuates over time due to variables such as the weather, sunlight, stress, diet. Brain fog, while not unique to lupus patients, impacts the every-day lives of people who experience it. “The main problem with brain fog research is that there is no standardized definition for it,” said Hayley. Without a clear definition, it is hard to show how it affects patients.
To help combat this, Hayley began a project at Kent State in which she interviewed 88 people with brain fog to help define brain fog by highlighting the patient’s experiences. Hayley explained, “what I am hoping to have as an impact of my research is bringing a focus on the patient communities and making them a part of the research process so we can better understand what is most helpful for them.” She plans on completing this project by the end of this summer 2022.
While general research about various diseases is important, goals which are not directly related to the patient will not have benefits for them. It might be helpful and interesting for people to know information about a condition when they do not have it, but the primary focus of the research should be the patients themselves, argued Hayley.
By allowing the patients to guide research done on their conditions, they will be able to see immediate improvements and greater understanding of why their bodies react a certain way or how to better handle symptoms.
As she continues on to her Ph.D. in the Biobehavioral Health program this fall, she will be working in a lab examining how environmental variables impact the various domains of cognition. Through this, she hopes to identify the extent to which some of the variables impact cognition in patients, “with the eventual goal of being able to help patients come up with different treatment plans or different ways to modify their lifestyle to help mitigate the impact of some of these variables,” continued Hayley.
Giving patients more control over the research done on their conditions allows for set goals to be put in place and standards for measurement of success will be established. By turning research focus to the patients, impacts of the research will be seen more rapidly as well.
Hayley said, “I would like to be able to emphasize the patient’s experiences and help them be better connected to the scientific community, because that is where true change is made for their lives, if you just ask them what they want.”