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What kind of research did you do at ����ɫ��ҹ?

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Hayley (she/her): A lot of my research focused on cognition and people with systemic lupus erythematosus or just “lupus”, which is an autoimmune disease that can impact any system in the body, including the central nervous system. Lupus is a disease that operates in a series of flares and remissions. A lot of the current research focuses on one timepoint, which is not helpful for a disease that is constantly changing. So, I wanted to look at how cognition fluctuates over time in people with lupus and what type of environmental variables impact the condition, for example, stress; diet; and weather variables, because sunlight, interestingly enough, can have some negative impacts on lupus patients. 

In addition to that, I was also interested in brain fog which is more known today because of long COVID-19. A lot of people with long COVID-19 are experiencing brain fog, but before we had COVID-19, brain fog was and still is a symptom of a lot of people with different chronic conditions, including lupus, and some infectious diseases, such as Lyme disease. Brain fog is this ill-defined cognitive symptom where people experience various memory deficits. The main problem with brain fog research is that there is no standardized definition for it. Researchers have created their own definitions, sometimes basing it off previous research that potentially had different objectives. There is no current standardized definition of brain fog, so it makes future research much harder to work on because it is hard to know exactly where to start and what you should work on with so many definitions. 

My brain fog project was a qualitative project focusing on defining brain fog in a lot of different chronic condition populations. I interviewed 88 people with brain fog, and due to the amount of data and only recently receiving the transcriptions, I am still analyzing it. The goal of that research was to ask people who have brain fog what the experience is like for them so we can truly get a lot of different perspectives on what brain fog is like for different people because current research lacks that. I am hoping to have it finished by this summer before I go into my PhD program. I also dabbled in mice research while I was at ����ɫ��ҹ, working at a circadian rhythms lab. I was really interested in the problem of sunlight and lupus and why sunlight contributes to a lot of these problems. That is a broad overview of what I did at ����ɫ��ҹ.

What do you hope to be some of the long-term impacts of your research?

Hayley: I like to focus on the centering of patient experiences in research, as I think that is a huge component of health research that has been largely ignored throughout the decades. Researchers might collect research for many different reasons including funding available for certain topics, having a special interest in a certain molecular mechanism, or perceiving there is some unmet need in certain diseases. The problem is a lot of these researchers are not involved in the patient communities; therefore, a researcher might be looking at how fatigue impacts people with lupus but is not talking to the patients in the community, so it is hard to gauge exactly what the patients want out of that research.

From my research, I hope to bring a focus on the patient communities, making them a part of the research process so that we can better understand what is most helpful for them. A lot of times research gets lost in the matrix, we spend millions of dollars doing all this research, but the patients do not know about it, they do not understand it, it is behind a paywall on some journal website, or they lack the scientific understanding to translate it to their own life. It is upsetting for people who have a lifelong disease, as they cannot read about it. I have this myself, and thankfully I have the education and ����ɫ��ҹ’s access to academic libraries to be able to read about my disease, but so many patients do not have that. I would really like to be able to emphasize their experiences and help them to be better connected to the scientific community, because that is where true change is made for their lives.

What so far has been your proudest moment or accomplishment in the research you have done?

Hayley: One of my favorite moments at ����ɫ��ҹ was when I presented at the Undergraduate Research Symposium. I had my little poster on lupus and was excited to present the results from my first research project. A lot of people tend to visit, since they have hundreds of posters set up and people are just milling about everywhere. But I remember a woman came up to me and asked me to tell her about it, so I gave her a little background on the research. She has lupus and had said it was interesting to hear what I was doing because she thought this is important. It was so rewarding for me to have even one person who has the disease find some impacts, no matter how small, and for her to feel like she was heard and that her concerns were being seen in actual research. I had the opportunity to spend a little bit of time with her explaining how this research works and how she might get more involved in lupus research, since a lot of patients do not know that the Lupus Foundation keeps a website updated with different resources for research and on how clinical trials work. It was a very small moment, but it was nice to be able to talk to someone who also has lupus and share my research with them. That has been my proudest moment so far.

Now that you are no longer an undergraduate student, what do you now think the most beneficial part of doing research was as an undergraduate student?

Hayley: I loved doing student research, and I encouraged a lot of my fellow students to do research because I think it exposes you to so many different ways of thinking and so many different problems in the scientific community that you maybe have never heard about. Even still, I like to go to various research talks. For example, the Brain Health Research Institute will have different talks every month, or even broader in the scientific community where you are exposed to so many different scientific issues that you would have otherwise never learned. Classes can only teach you so much about research. I remember my courses during my undergraduate years talked a lot about research since that is what science is founded on, but I never really understood the true impact or how it worked; it was just an abstract concept. I think it is so important to get hands-on experience, as it can broaden your horizons. Through research, I was able to see the real-world impacts of science in the case of molecular biology and cell biology. It was well and good to learn about molecular mechanisms, but it is sometimes hard to conceptualize what that means for a patient or the average person. So, research gave me that avenue to fully see how these tiny little cells actually mean something in science, medicine, and the average person. I think it is important to get involved because it is fun and broadens your mind. I encourage everyone to do it too, even if you are not in the sciences, as any student can get involved in research. Anyone can go and join a lab; they always need help. I think everyone should try it at least once.

Is there anything else you have not had the chance to talk about that you would like to add?

Hayley: The massive amount and spectrum of research being done at ����ɫ��ҹ is fascinating to me. I had professors who were working on breast cancer vaccines and making human tissue in the lab. I had the opportunity to work in Dr. Delahanty’s lab, which looks at how trauma impacts adolescents. It is amazing how all this research is being done just at ����ɫ��ҹ. It is insane, ����ɫ��ҹ has such a huge spectrum of research, it blows my mind.

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Written by: Ella Wold