In the past few years, I’ve been asked twice to participate in clinical trials. I said yes both times without hesitation.
As a health reporter, a big part of my job is reading — and talking to experts about, and communicating the significance of — studies. The hours I’ve spent steeped in medical journals have made (at least) one thing abundantly clear: Modern medicine stands on the shoulders of anonymous volunteers. Any time a new drug hits pharmacy shelves or recommendations for preventive health screenings change, it means a lot of people like me said, “Sure, I’ll be part of your data set.”
Since the pandemic started, I’ve gone from someone who’s willing to participate in research to one who proactively seeks out lab-rat opportunities. So far, I’ve been in two trials: One tracked the pandemic’s effect on mental health and relationships via online surveys in order to assess the psychological and emotional benefits of receiving daily text messages. The other asked people who believed they hadn’t been exposed to the coronavirus to submit blood, which researchers tested for antibodies to determine how widely the virus had spread throughout the country.
I’m hardly the only person who’s felt the pull to be part of COVID research — much of what doctors, epidemiologists and other experts have learned about the coronavirus is thanks to countless people worldwide who’ve donated their blood, time and medical records in the name of public health.
“We were surprised and overwhelmed at how much of a response we got — it had never been easier, in my entire career, to enroll people into studies,” says Jonathan Kanter, a clinical psychologist and director of the Center for the Science of Social Connection at the University of Washington, whose lab ran the COVID mental health trial I joined. “There was a sense of solidarity among people that they wanted to be part of a community, working together to solve this.”
If you’re considering taking the participation plunge, here are seven things to know, courtesy of one seasoned study subject (me) and a few experts.
Finding COVID clinical trials is easier than you might think
There are plenty of opportunities to get involved in COVID research, and you can use a few different sites to find trials accepting healthy and asymptomatic volunteers.
ClinicalTrials.gov has the most comprehensive list of clinical trials related to a wide range of health conditions, including COVID-19. If the sheer amount of information feels overwhelming, another option is Trials Today, which makes it easy to whittle down your search to only the most relevant trials. I put in my age, gender and zip code and ended up with 6 results, compared to 161 when I entered similar information on ClinicalTrials.gov. If you’re specifically looking for vaccine trials, your best bet might be the COVID-19 Prevention Network, created by the NIH’s National Institute of Allergy and Infectious Diseases to conduct phase 3 clinical trials for COVID-19 vaccines and monoclonal antibodies.
Doing good can boost your mood
Right now, unless you’re a healthcare worker, there aren’t many tangible ways to directly help COVID patients. But joining a clinical trial is a bonafide act of altruism. In fact, back in 2005, doctors coined the term “information altruist” to describe someone who donates their genetic data or other personal health information to research for the sake of the greater good, even if doing so doesn’t benefit them individually.
Giving back also happens to come with well-supported psychological and emotional benefits.
“People who are randomly assigned to help others or to focus on the happiness of others become happier,” says happiness researcher Sonja Lyubomirsky, a professor and vice chair of psychology at the University of California, Riverside. “We think what’s special about doing acts of kindness is that they make us feel more connected to the people we help. It makes us more optimistic about humanity as a whole, and it makes us feel like a better person.”
Be prepared for the possibility of rejection
Volunteering for a trial doesn’t guarantee participation in it. Even if you do get accepted, the process of becoming a study subject can be slow going. I was accepted into the COVID antibodies trial two months after I signed up. Hopeful volunteers are rejected for all sorts of reasons — the trial could be full, or you might not be an ideal candidate because of your health history or demographic profile. It’s crucial for clinical trials to include diverse groups of participants.
“One of the aspects of volunteers — it’s just a fact — is that they tend to be white,” says Dr. William Schaffner, medical director of the National Foundation for Infectious Diseases and professor of preventive medicine and infectious diseases at Vanderbilt University’s School of Medicine in Nashville. “Anybody who’s running a clinical trial is working very hard to try to recruit people of color, underrepresented minorities, into the trials so that the final results will indeed more represent the population in the United States.”
Consistency is (almost) everything in self-reporting
Some clinical trials ask participants to “self-report” information. Typically, this entails repeatedly filling out a questionnaire about your emotions, physical symptoms or behavior. For example, I had to submit daily ratings of my mood and interactions with others for the COVID mental health trial. If you’re given questions that seem open to interpretation, that’s OK. Just decide how to answer them and then do it the same way every time.
“Because we did [the study] for a month straight, you get to serve as your own control,” Kanter says. “As long as you’re responding to these items the same way every day, we can statistically control for the fact that you may be responding to these items differently than somebody else, because we have a whole bunch of your data. But we can’t guarantee that you’re responding to the single items the same way that another person is.”
Always read the fine print
During the trial recruitment process, researchers should supply you with detailed documents explaining why they’re running the trial, what they expect to learn from it, the requirements for participation and any potential health consequences that participants might incur.
If you have questions or concerns after reading the trial materials, you should follow up with the research team. (Their contact info should be provided.) It’s best to speak to the doctors or scientists running the trial, rather than your own doctor, even if that’s who recruited you.
Some people quit when they discover they’re controls. But if you’re participating for the greater good, don’t be a fairweather study subject.
“Go to the study people, because the doctor may only have cursory information about the study they’re suggesting to you,” Kanter says. “From my end, I usually love those participants that are thinking about whether to join the study or not. They are going to be more committed to the study if they join it, so I love those questions.”
Don’t feel bad about prioritizing your own health, even if that means quitting
Many COVID-19 clinical trials recruit hospitalized patients who have no options for recovery other than a new treatment of uncertain efficacy. But if you sign up as a healthy volunteer to receive a vaccine or to try any other type of intervention, and then you learn about participation requirements or potential risks that make you uncomfortable, you can opt out.
“People are generally wary of new things that haven’t been out there for a long time and validated,” Schaffner says. “There’s this notion of (which is correct) ‘Well, you’re experimenting on me.’ Well, that’s right, but we’re doing it only in a voluntary fashion and with fully informed consent. There’s a lot of information for you to think about before you sign on the [dotted] line.”
There’s a chance you’ll get sugar pills, or no treatment at all
Volunteering for a trial means volunteering to receive the vaccine or other intervention being tested — or to be in the control group that doesn’t get the real thing. The choice isn’t up to you.
Participants in drug trials don’t know if they receive the intervention or the placebo. In some trials, the researchers don’t know either. These are called double-blind trials, and they’re considered the gold standard in clinical research because they’re unlikely to produce biased results.
“Having people stay in our boring and uninteresting control groups is more important, scientifically, than anything.”
Some studies, like the COVID mental health trial I did, don’t lend themselves to blinding. In that case, the intervention group got daily text messages from researchers (sent with the goal of improving participants’ mental health and relationship quality) and the control group got nothing, so I knew right away I was in the latter. Sometimes, for behavioral interventions, the control group gets the standard treatment for a condition instead of the experimental one. But there’s no way to create a “placebo” text message or psychotherapy session.
I stuck with the trial until it ended, even though it would have been more interesting to get the intervention. Some people quit when they discover they’re controls. But if you’re participating for the greater good, don’t be a fairweather study subject.
“It’s easy to keep people in the intervention, because they got what they were hoping for,” Kanter says.
“[When some people] realize that they didn’t get the intervention, they drop out, and that really hurts our science. Having people stay in our boring and uninteresting control groups is more important, scientifically, than anything.”