As both a clinician and a scientist, Dr. Choi maintains a clinical practice as a registered nurse at a psychiatric hospital in downtown Los Angeles. And, she was the first and only nurse included in the US Forbes “30 Under 30” healthcare list in 2020. She was also recently inducted as a fellow of the American Academy of Nursing.
Dr. Choi is a psychiatric nurse and health services researcher as well as an Assistant Professor of Nursing and public health at UCLA. Dr. Choi studies, health services and policy approaches to promoting mental health among children and adolescents, and her research projects include studies on adverse childhood experiences, developmental disabilities, and the intersection of homelessness and mental illness.
In other words, Dr. Choi is the real deal and what she had to say to Nurse Alice was also incredibly real, in all the best ways.
Dr. Choi Participated in The Pfizer Clinical Trial
On a recent episode of the Ask Nurse Alice podcast, Nurse Alice sat down with special guest, Dr. Kristin Choi to discuss what it was like to be part of the trial for the Pfizer COVID-19 vaccine and the vital role that nurses play in presenting health information to the public.
As a nurse, Dr. Choi understands fully what it means to be on the frontlines, but she is also uniquely equipped to look at all sides of the vaccine challenges––from research to public misinformation to the fear that exists around vaccines. Dr. Choi was incredibly refreshing as a guest and even admitted her own worries about receiving a new vaccine, so you’ll appreciate hearing her point of view.
Nurses’ Role in the Pandemic
Dr. Choi spoke to the vital role that nurses have played in the pandemic, from education to leading the way in healthcare for patients to being public figures (sometimes, whether they like it or not) that people can turn to and trust.
She told Nurse Alice that although she is a nurse and works heavily in research herself, it was actually an Instagram ad that led to her deciding to become a trial participant in the Pfizer vaccine study.
“When the COVID 19 pandemic started back in 2020, it was really clear to nurses to step up and in a lot of different ways, and so that no matter what your practice area is, whether you’re doing, you know, mental health or hospital work or public health research, I think that nurses really had a big role to play in educating the public, of course, responding to the pandemic,” Dr. Choi told Nurse Alice.
And despite the fact that she has been involved in many studies as a professor at UCLA, Dr. Choi admitted that she had never actually been on the other side of research as a participant. So when she saw an Instagram ad for the Pfizer trial–” I didn’t have, like, any insider info or anything; as a researcher, I just got to add like everyone else,” she clarified–she was intrigued.
“I clicked on it,” Dr. Choi remembers. “I just wanted to kind of see how they were recruiting people and what it looked like. And when I started reading about the study and started thinking about it, I just thought, ‘You know, wow, this is a great opportunity for me to step up as a trial and be a part of the science.’”
So, she signed up, receiving her first dose in August of 2020. She, of course, was not told if she was receiving the actual vaccine or a placebo dose, but when she experienced what she called pretty severe side effects, she had a strong suspicion that she had, in fact, received the actual vaccine. (And her suspicions proved to be correct: she was unblinded from the study in December of 2020 and found out that she had, in fact, received the real vaccine.)
On Vaccine Side Effects: “It Really Scared Me”
Dr. Choi was very honest with Nurse Alice that the side effects she experienced after receiving her dose during the vaccine trial “scared” her. She explained that although she has received a lot of vaccines before, she’s never really had any side effects from a vaccine.
This experience, however, was very different. Following her second shot (about three weeks after the first) Dr. Choi said she experienced severe symptoms that included :
- Muscle pain
- Chills
- Headache
- Fever of 104 degrees–” this was the thing that kind of set off my alarm bells,” she added.
“To be honest with you, I was pretty scared,” Dr. Choi told Nurse Alice when she first developed the side effect symptoms. “As I said, I’ve never had a reaction to a vaccine before. And even though I had read about the mRNA and I trusted the study doctors and researchers and really felt like I was as informed as I possibly could be, it’s scary to see your body having that kind of reaction.”
“Some people do have fevers after a vaccine, and it’s rare, but it does happen,” she continued. “But because it had never happened to me and we’re in the context of this new kind of vaccine, it really scared me and made me worry if something had gone wrong, and if something was happening to me.”
Despite her initial fears, Dr. Choi said she turned to the research on what other people had been experiencing during the trials for comfort.
“I pulled up their reports because I wanted to see what had happened,” she said. “I was on Stage 2 and 3 trials, but there had actually been other trials before me to develop the best. So I looked at those and what I saw was that the majority of people in those earlier trials had also had side effects.”
Seeing that others had experienced the same side effects really made her feel better, Dr. Choi admitted to Nurse Alice.
“That really gave me reassurance that it was okay,” she explained. “And it also brought me back to nursing school when I thought about what we learned about vaccines–when we get a vaccine, it activates your immune system. And that’s why after vaccines, we get those signs, like having a fever or chills or muscle pain, etc. And so it really helped me work through that fear, just to lean into the science and really look at the data and what I knew was true. And you know, again, I turned out to be just fine. I’m so grateful that I got it at that time. And you know, it was a really helpful experience to be a part of that science.”
Sharing Her Experience
Dr. Choi also chose to write about her experience in both being a scientist who actually enrolled in the trial and what it felt like to be a patient with symptoms that were (very validly so!) scary.
“After I had that strong reaction to the second dose, I wrote an article about my experience in the trial for two reasons,” she told Nurse Alice. “One is that I really wanted to make sure that doctors and nurses were prepared to help have conversations with people about vaccines, and what to expect for side effects. But the other reason is that, you know, I think that it really gave me interesting insight as a researcher to be on the other side of research. We have a long history of researchers treating people more in our studies as disposable. In some ways, we often want to use people to get data and answer a question, but we don’t think about the human side of what it means to be in a study and maybe to be really, really depending on getting that treatment.”
She pointed out how difficult it was to be on the other end of a trial, especially for something like a potentially life-saving vaccine in the middle of a pandemic, and not know whether the stress and trials she was going through were actually for anything.
“It was hard to not know whether I or not,” Dr. Choi noted. “And that really gave me so much empathy for patients when I thought about what it must be like to have a chronic disease or something like cancer or a rare disease, and to be relying on these clinical trials hoping for treatment–feeling that blind, it’s really a difficult position to be in. And I experienced that, of course, to a really, really small degree compared to what some patients experience. So it also gave me a lot more empathy for participants in research and made me think a lot more about how I approach my own science now.”
What it Was Like to be Part of a Vaccine Trial
Dr. Choi was also very open and honest about what it was like to be part of a vaccine trial. She explained that the process included:
- Informed consent with the research team, discussing the risks, the benefits, the alternatives, and making sure that people are making an informed decision about being in the study.
- Medical screening to make sure that she was healthy and able to participate.
- Baseline blood samples
- A COVID test
- The vaccine dose (which could have been a placebo)
- A daily log of potential symptoms or side effects for the first week (logged in a special app)
- And then after the first week, it was a weekly log of symptoms of side effects
- The study also requires additional follow-up testing to look at antibody levels and other factors for an additional two years
For her time and participation in the study, Dr. Choi explained that she does get a small payment with each visit and the researchers pay for parking when she has to go in to give blood, for instance.
“There are some mechanisms in place to try to retain people,” she said. “So when I go to the study, they always pay me for my time and they pay for my parking. So try to make it easy for people. And there’s a small amount of money for each visit, as well as for doing the weekly symptom log that helps incentivize people to do it, they spend a lot of reminders, they’ll call me and text me and really want people to stay. And so they can get the full data. If people drop out, it can make it really hard to draw the conclusions.”
The History of Vaccine and Medical Research
Dr. Choi and Nurse Alice also tackled the difficult conversation of how the approaches to research involving vaccines (and other medical interventions as well) have historically been very un-inclusive of the actual patient population in real life.
“In a lot of research, we do not have good studies of women, we do not have good studies of people of color. And we don’t have good studies of children, those groups tend to really be excluded in research,” Dr. Choi explained.
However, she added that there is a concerted effort in the research world to change that. She explained, for instance, that in order to get funding for studies, the guidelines must outline how the research team plans to recruit diverse samples of people.
“We want to make sure that what we learn is going to apply to all kinds of people and not just to be learned on white men, because we know that that’s not gonna be generalizable to all the rest of us,” Dr. Choi noted.
She pointed out that the COVID-19 vaccine trial was no different, in that the researchers faced challenges especially reaching people of color.
“The researchers knew this and really wanted to make an effort to reach out to people that might not historically be in trials, which maybe that’s why they were doing things like advertising on Instagram,” Dr. Choi told Nurse Alice. “But I think that representation really, really matters because as we’ve seen the vaccines roll out. We know that there have been some really persistent disparities, especially by race and ethnicity, and who was getting the vaccine.
And it really, really is important that you know, when I’m talking to people about the vaccine, that I can point back to that research and say, ‘Look, people like you, who are your age, your race, your gender, people like you are in the study, and they were okay, we have data that this vaccine is okay for people like you–it makes a big difference.”
Dr. Choi also added that the experience of seeing how it was a challenge and an effort to get a diverse sample pool for the vaccine challenged her as a researcher too.
“It’s something that I also think about knowing my research: how can I make sure that the work that we’re doing is really representative of people and isn’t just biased to the kinds of volunteers that we usually get for research?”
The Messenger (That’s Nurses!) Matters
Nurse Alice and Dr. Choi also tackled the topic of how healthcare professionals can better make accurate medical information accessible to everyone.
“If we, as healthcare providers and professionals, sometimes have a hard time understanding the research, let alone keeping up with all the research that’s coming out, how can we expect people in the general public who are busy living their own lives to do the same?” Dr. Choice pointed out.
She noted that while the incredible science that has come out of the pandemic has been a “bright spot,” it’s also come alongside a lot of “bad science” too.
“There’s been a lot of falsified studies, false information, a lot of bad reporting of data, and a real proliferation of garbage science, too,” she said. “So how do we distinguish those things?”
Dr. Choi proposed a few different solutions:
- Any study funded by taxpayer money needs to have results that are fully accessible to the public as well, i.e. not behind a journal paywall
- Studies need to include the takeaways and main points in required sections without needing full technical knowledge
- More support, training, and utilization of community-based participatory research or patient-to-patient engagement and research
- Utilizing social media for good, with infographics and visuals to communicate important, science-backed research
- Empowering nurses who share knowledge online with helpful tools
“We need people like doctors and nurses who can do that translation to go and talk to people where they are, and that often is going to be the news,” Dr. Choi said. “It’s going to be social media, it’s doing things to communities.”
“Anytime we can reach out to people where they are and bring them science really matters and it matters who the messenger is,” she continued. “People don’t always trust politicians, they don’t always trust the government. They don’t always trust, you know, the CDC and the World Health Organizations. But research really consistently shows that people trust their own doctors and nurses. And so I think that folks like you and others who are willing to go out there and do that translation work from a trusted voice make a huge difference.”
How to Get Involved in Clinical Trials
If you’re a nurse or someone who is interested in learning more about clinical trials, or want to participate in a research trial yourself, Dr. Choi recommends checking with your local universities, where research is always ongoing, or with the National Institutes of Health (NIH).
“Even if you don’t have a chronic condition, we often need healthy volunteers who can be a part of the control group,” she explained.
She also suggested other ways you can get involved in clinical research: one as volunteering to be part of the ethical review process, which is required before the start of any study. While those are mostly scientists, Dr. Choi noted that they also always have seats for patients and community members.
A second route would be to look to join a patient advisory board or community advisory board or to have a role where you’re involved in the research. And lastly, if you’ve been part of a study, she suggests simply reaching out to the study’s lead author and asking about future findings or what will be done with the research.
“I’ve had many, many people do that with studies that I’ve been running and then they’ve come on to my studies to be co-authors on publications or to advise our next study,” she said. “If you reach out, a lot of scientists are willing to talk about their work.”
Dr. Choi ended her conversation with Nurse Alice by explaining that she was grateful to have the chance to experience both sides of clinical research.
“I think that being involved in science and creating new information and answering questions that we don’t have the answers to is so exciting,” she said. “This was a very positive experience and I’m looking for opportunities to do it again.”
Author’s note: if you loved this conversation with Dr. Choi as much as we did, you’re definitely going to want to follow her on Twitter, @kristenrchoi, where she shares scientific research, news, and new developments in the most down-to-earth-way possible.
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