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We sat down with our friends Lindsey and David to talk about medical misinformation and its effects on relationships, the challenge of choosing what to trust in the swirl of constantly changing pandemic info, and the role that communication can play in increasing access to vaccines and clinical trials. Lindsey and David also tell the story of their family’s participation in clinical trials for the COVID vaccines, and the surprising ways it changed their views on social media and the medical research process.
Sources and further reading
- Gerrard, M. and R. Nevil (2006). We’re all in this together. [Recorded by V. Hudgens, A. Tisdale, L. Grabeel, and D. Seeley]. In High School Musical [Videorecording]. Disney Channel.
- Holmes, R. (1979). Escape (The Piña Colada song). On Partners in Crime [Album]. Infinity Records.
- Osterholm, M. (2020-2022). The Osterholm Update. [Podcast]. University of Minnesota Center for Infectious Disease Research and Policy. https://www.cidrap.umn.edu/covid-19/podcasts-webinars
Transcript
| A | Hi, I’m Abigail Bakke and this is TC Talk. I teach and research on the topics of technical communication and health writing, and I do this podcast with my non-academic partner, Benton. This episode is a little different because it’s our first interview-based one. One of our goals with TC Talk is to help show that tech comm is not just a topic for academics, but that it makes a difference in people’s everyday lives. And so when I heard that our friends Lindsey and David had enrolled their child in a COVID vaccine trial, and subsequently enrolled themselves in a trial, I wanted to hear about their experience. They were kind enough to talk to us about how they researched the vaccine, what it was like participating in a clinical trial, and why they would do it again. |
| A | We can start with not official questions yet. Just kinda warm up. Sometimes helps to start with something that’s a little not like. Tell me about yourself and what skills you bring to this company. |
| D | What would you say you do here? |
| A | Okay. So I asked Ben if he had any questions and he had one, but it might be way too personal, so |
| D | Let’s start with a personal one and then there’ll be downhill from there. |
| B | What is the most off the wall or bizarre thing that any of your parents have said about vaccines? |
| D | Can I go first? I know right off the top my head. |
| L | Yeah, go for it. |
| D | In the summer after the first wave. And so we were visiting my brother for my birthday actually. And our [Offspring #1] had gotten sick with a cold or something. We’d had him COVID tested. We hadn’t had the results back at the time, but I remember going down and I made it, cooked all this food. I drop it off. I say, well [Offspring #1]’s sick. So out of an abundance of caution you won’t see us today. And my mom said, “Oh good, maybe he got COVID, so he will get antibodies that way.” |
| L | Which was the safer way to get them in her mind. |
| D | Which is so insane. That’s not what antibodies are for, mom. Like. You don’t get them to have them. They’re not like Pokémon where you just collect antibodies. It was it was so bizarre. Yeah. And it’s just one of those mm-hmm? kind of moments. |
| L | Yeah. And my story, I mean, all of the cliche fears that people have who are anti-vaxxers like it somehow connects you to 5G or et cetera, et cetera. Like my family would believe those. But I don’t know how to make this not the biggest downer in the world, but this is the most bizarre, unfortunate thing was when my dad was really ill with COVID. He asked my mom as he was laying in bed with really low oxygen, I was begging my mom to take him to the hospital. And he said, “Can you please get me the vaccine?” Like in that moment was when he finally thought, Crap, I need this. And my mom had to say, that’s not how they work. Up until then they had, their argument with me was we are smart people too. Just because we didn’t go to college doesn’t mean that we don’t also read up on these things. And then in that moment, I’m kind of surprised my mom even told me that story because it revealed so much to me. Like yes, they were reading a lot. But they had no understanding at all. My dad at least had no even basic understanding of how a vaccine would work. He thought it was like a treatment. |
| B | Well, I guess one kudo to your mom for knowing that that’s not how vaccines work and being right? |
| A | And two kudos for your dad, for being willing to get it even if at the wrong time. |
| D | I mean he’s since changed his mind again and now it doesn’t… |
| L | Oh yeah. They still, you know, they don’t need a vaccine now because “they already got it and they proved that it’s not deadly and they have their immunity now.” |
| A | Oh right, the antibodies. |
| B | It’s not deadly, so how bad it was didn’t matter. |
| L | Yeah, not anymore because he survived it. So whew, got lucky. |
| A | Yeah. |
| L | Which is true, but also, you could follow that up with a vaccine. |
| A | That must have been so scary. |
| L | It was. And frustrating. |
| A | And before we chat about the vaccine trials that you guys participated in, tell us a little about yourself. And like I said before, you can go totally secret agent and come up with your own pseudonyms. Or you can use your full name, whatever you’re comfortable with. |
| L | I’m Lindsey. I was a public school music teacher for 11 years. Then I had my kids and I decided to be a stay-at-home parent. And my background is a bachelor’s degree in music education and a master’s degree in education and curriculum instruction. I love cats. |
| B | Out of curiosity, when did you decide to stay at home? |
| L | When I was on maternity leave, I started dreading going back to work. And then I got lucky enough that the teacher who had been subbing for me, I asked him, I said, “Would you be willing to go part-time and keep half of my job” and he said, “Yeah, that works for me.” So then I worked half-time for a whole school year. And that gave me the opportunity to test out what does it feel like to drop my kid off at daycare and go to work. And what does it feel like to be at home with him? And at the end of it, I just knew I wanted to be home with him more than I wanted to be teaching. |
| A | It’s such a nice way to kind of experiment with, these are the different options. This is what it would be like. |
| L | Yeah. |
| D | And then COVID did move your timeline up quite a bit. |
| L | Yeah. As I was teaching half-time, COVID happened in March and then I was teaching remote at home half time. |
| D | Yeah. And then our daycare just, our daycare completely shut down. |
| A | I remember that actually because Lindsey, you were like, I have to keep my windows open at school even though it’s March and cold in Minnesota. And I was like, does that actually do anything? And it turns out that ventilation actually super matters. But that was at the stage where we were all like we need to wash hands. |
| L | Yes. |
| A | Didn’t know much about it. David, how about you? |
| D | Hi, I’m David. I am a full-time software developer. And I have an undergrad degree in Management Information Systems. |
| L | I want to emphasize that we’re both like middle-class, boring white people who have undergrad degrees and had to work really hard to research and find information about COVID in general and vaccines. That’s why I kind of wanted to state our levels of education because the whole process of going through clinical trials was fascinating to me. Like what kind of abilities you need for technical reading, your social connections, the kind of job you have, all of those affect whether or not you can even participate in a trial. |
| A | Yeah, absolutely. So you’re obviously privileged in ways that lower some barriers. |
| Yeah. | |
| A | And yet, like you said, it was a challenge. |
| L | Yeah, and I guess now that you say that I also want to say, we always say this phrase like “we’ve done the research.” And my parents say that too. And the fact is we have not researched. We are simply reading other people’s research or what they are presenting as research. |
| W | Meow. |
| L | He came back. Sorry. |
| A | Thanks Woolly Bear. I agree. |
| L | He emphasizes. Yeah. So a big part of our journey with clinical trials was that we had parents who completely ignored all of the scientific evidence and public health information that was available to them. And we had to decide how much we were going to continue engaging with them and seeing them knowing that the kind of risks that they took were not what we would take with our lives. And then especially with our boys like do we let them see our children if they’re not taking any COVID precautions? And we knew that that would essentially break our relationship with our parents. And because that is such a significant decision to make, we did, I did like a genuinely crazy amount of reading. Like I had to talk about it with my therapist because I would spend hours each night looking at research articles, finding people on social media like epidemiologists and public health scientists trying to make sure, like are we making the right decision? And in that process of course, stumbling over tons of misinformation. |
| A | Wow. |
| L | We were thankfully seeing social media accounts of epidemiologists who would say, “Hey, I see this totally inaccurate, false information floating around. Here’s why it’s not correct.” And then they would debunk it. When I say we did our own research, it was really just, |
| D | I mean it’s the same thing. We consumed social media is what we did. |
| L | Yeah. |
| D | But it was like the good stuff. Like, I don’t know, being able to vet the people a little bit, look at their background, understand, oh, here’s your credentials. |
| L | Here’s where you got your education, here’s who’s funding your research, where you work. Are other people in a science community in agreement with you? Is there any kind of consensus? Does it align with like public health messaging that we’re hearing from the CDC? We just did tons and tons of reading because for me, I needed that affirmation that I was making the right decision. And I think if we hadn’t been dealing with that relationship situation, there’s no way I would’ve done that much reading. I would have just been saying like, well, what does the CDC say? And then let’s go with that. |
| A | Yeah. |
| L | We went above and beyond what they tell you to do. |
| A | And that process you’re describing, that does not come naturally, you know, so when someone says, “Oh, I did my research,” like you said, that can mean a lot of different things. |
| B | I looked at Wikipedia. |
| A | I typed something into Google, or more frequently, I looked something up and cherry-picked the information that supports my preconceived idea. |
| B | I checked it out on Brightbart and here’s the real truth that they don’t want you to know. |
| L | Yes. |
| A | And knowing that you’re educated and you value public health. Were you kind of going in with an awareness of, Hey, these are my biases and, you know, what does it take to break past that and really approach this with an open mind? |
| D | Yeah. I would say constantly. We were so concerned about being right. And maybe that’s like really type-A firstborn stuff, but that like we had to dig in and understand and really vet who we were listening to and what our sources were. Just because our parents were constantly coming at us with this stuff. And so half the job was debunking the garbage they were throwing at us. But then being super paranoid that the stuff that we weren’t consuming was in turn garbage. Because we were basically following Instagram influencers, right? Like highly credentialed influencers. But in the back of your mind, you know, there’s always potentially economic incentives for getting views and everything and so just being really paranoid about being right I think drove us to, I don’t know, Just look into the backgrounds of these people and make sure that they were trustworthy. |
| A | It sucks that you have to approach it with that level of fear. But you understand the stakes and you understand the information out there, it’s just not clear cut because even the most credible sources that we could consult, the CDC, for instance, they’ve changed recommendations. They have walked back certain recommendations. And this is not me saying the CDC is not credible, but it’s just acknowledging, I can get why people get skeptical. |
| B | It is not a common thing outside of the circle of scientists to understand the scientific process. |
| A | Which requires changing and adapting as you get more information. |
| B | Exactly, it’s the opposite of politics where you take information and you fit it to your understanding. Science is new information comes up, you reassess your understanding to fit the information. With something that’s completely new like Coronavirus was, new information was coming out faster than we could really get a handle on it. Every nation in the world had different approaches. Most of them were wrong at the beginning. About like, should we panic about what’s happening in China? Boy, I’m glad it’s there and not here. Yeah. |
| A | Guilty. |
| L | And I am thinking about when you’re talking about the CDC having to shift its guidance based on its new information that it’s getting. Not only do the general population have to understand that, they also have to understand that they’re balancing like individual health versus truly public health. And I was listening to a podcast by Dr. Osterholm and he was one of the advisors to the Biden team. And he said that he was a part of the team that was talking and giving input on well, how long should we say you have to isolate after you have a positive test? And he said, he just point blank said, we chose five days because our hospitals would have collapsed if we had chosen less than that. I misspoke. It would collapse if we chose more than that. |
| B | And probably the other too because it’s gonna spread. |
| D | Yeah, more cases then. |
| L | Yeah. That’s not at all based on how long you’re contagious or anything like that. So not only are you having to give grace to the CDC for the fact that it’s changing its guidelines according to the changing data that it’s getting, but you also then have to look at their guidelines and somehow as an individual parse out, Okay, well, that’s what that means for the hospital system in the US. What does it mean for my individual family? |
| D | Which just brings to light the impossible task, right? How do you pick the right one? They picked they picked five. Who knows if that was right? |
| A | Yep. I do want to ask too about where this originated for you because if I understand correctly, you got the initial COVID vaccine, but you were in the trial for this booster that’s just come out, Is that right? |
| D | The booster prior to this one. So not the bivalent COVID one, the one that Europe got. |
| L | Which is BA.1. So the original Omicron variant, that’s the trial that we entered into. |
| B | Whole family? |
| L | Just David and I were in the Omicron booster study and our youngest son, who is 20 months right now, he was in the trials for the original vaccine for children. And he was the first one in it. So we knew we wanted to vaccinate our kids. We were desperately waiting for any kind of data and they kept on pushing the timelines, if you remember, they would say, well, it’s coming out in September and then Pfizer would make an announcement and oh, it’s not until November. |
| D | We actually turned down an opportunity to join the studies earlier. |
| L | Oh yeah, that’s right. |
| D | I forget the exact timelines, but we were under the assumption of vaccines would be here for our kids in two or three months. And at that time we were like, okay, the blood draws are gonna be traumatic. Our kids like the doctor so far, like, let’s not give them a reason not to. Which in hindsight seems ridiculous. So ridiculous. And of course, those dates, it was nine months more, after that |
| L | We were getting increasingly frustrated that we were having to wait so long and kicking ourselves like why didn’t we take the chance to get them in the trials? Because round one of the trials is where they figure out dosing, so for sure your kid gets the real vaccine. But they’re testing out what doses they’re at, which was also part of our hesitation because we were like, Oh what if they get a really high fever from too high of a dose? |
| D | That was before we had done really any research at that point. |
| L | Yeah. |
| D | I don’t think we had a good understanding of the vaccines at that point. And so that, that first decision was kind of made in ignorance. |
| L | It was and then we realized that as time went on, like the side effects from vaccines are only temporary. There’s nothing lasting about them when you’re looking at a dosing, a dosage, phase one trial. So then we reached out to the trial. What do I want to call it? |
| D | Coordinator. |
| L | Coordinator and said, Hey, we really regret this. Can we, any chance you still have openings? And at that time, the age group for our older son had closed. But they still had spots for the six-month to two-year-olds. And so we were like, Yes. Okay. We want a spot. Let’s get in. And by that time, they had determined what dosage level was most effective and had the least amount of side effects. And so then it was just a matter of you’re either gonna get a 25, what is it, microgram dose of the Moderna vaccine, or you’ll get a placebo, and you’ll have to do two blood draws. So we said like yes, let’s jump at the chance. And it was a 70% chance of getting the real thing, 30% chance of getting placebo. And we didn’t know what we had. He had a teeny tiny rash on his leg like one day afterwards after one of the doses. Otherwise we couldn’t tell at all. And then when the data from the trials finally came in and the FDA approved it, then you get unblinded and we found out he had been placebo. |
| A | Oh, bummer. |
| L | Yeah. But during that time when I brought him in for one of the appointments to get I think his second dose. We didn’t know if it was a dose of placebo or not. They said, Oh, by the way, we’re doing trials for adults for the Omicron booster, do you want to be in it? And as they’re, as you have your baby laying there, like getting blood draws. Of course you’re like, Well I can’t sign my kid up for this and not sign us up. We immediately said yes. So that’s how we got into the study. |
| B | Clever move. |
| A | Play on your parental guilt. |
| L | Yeah. And that was part of round one of why we said, Oh, no, we’re not ready to join a phase one trial. Part of it also was like, would we have signed ourselves up for a trial? |
| D | We absolutely would now. |
| L | But at the time we were like, I don’t know. I don’t think I would have signed up for a trial. So is it like moral or ethical to sign your child up for something that you wouldn’t be willing to do? Now, having gone through it, I would absolutely do a trial again. |
| D | The part I’m kinda curious about is over the months and as the vaccines for kids kept getting more delayed and more delayed. I don’t know how much of our growth in understanding was anything we did, or if it was just lots of other people became frustrated in the same way that we were and so more information about, it was just produced and the great algorithm gave it to us, right? |
| A | Yeah. It’s totally fair though, that at first you didn’t have enough information to make a decision, and then you did have enough information. And that speaks to the informed consent process too. When you were initially approached with this trial opportunity, how was it framed for you? Did you feel like you had a good sense of the pros and cons, risks? |
| L | I want to back up just a little bit and say that the only reason we found out about the children’s trial was through a friend whose wife works at the trial site. And he said like, Hey, I know you guys are COVID cautious. My wife is running a trial for kids. You could see if you can get into it. So right off the bat, there’s like the first barrier about like whether or not you participate in trials. We knew that man, we knew his wife. We felt comfortable with them. We know their education levels, we know them on a personal level. We know that they would never participate in something that was nefarious or negligent. But then after that they send you a, so we say Sure, we’ll talk to her, please send us the information and you get a big packet of information that is very |
| B | It’s like a small book, right? |
| L | Yeah. I want to say it was like 25ish pages long, double-sided, size 12 font. And it’s from the actual research company, so like ours was, it was clear that Moderna had written the document and it was very technical language. You had to read it several times to wrap your head around, like okay. So if your kid is in cohort one, they have this many blood draws and they draw this amount and here’s their chance of placebo versus non placebo. And all of it is in really technical language. |
| A | No pictures? |
| L | No. No, not a single picture. |
| D | Logos. |
| A | I mean at least make a video, right? I have to ask, did you read it? |
| L | Yes. |
| D | Oh, yeah. |
| A | Okay. Okay. Because I wouldn’t blame you if you didn’t. Like I can see how information coming to you in that format automatically is going to create a barrier for some people. Like I said, you both are very well-educated and yet, it sounds like you found it if dense and |
| B | I’m sure it was written for the courtroom. |
| D | Yep. They’re definitely covering their butts a little bit in it. |
| L | Yeah. The paperwork that we read is the same paperwork they turn in to the FDA. |
| D | Which is not bad, like yes, please tell me, you know, exhaustively all of the potential outcomes of this trial. But it was hard to put in perspective like, you know, outcome is fever. Well, what does that actually mean? High fever. Okay, well, what are the odds of that? Well, you don’t know yet because it’s a trial so there’s a little unknown in there and a lot of scary medical terms too. |
| A | So was it for potential participants or was it just like, oh, here’s a, here’s a legal document that has to do with this trial. Take a look at it if you want. Was there any communication that was directly for people like you trying to decide, do I do this? |
| L | That was it. Like we said, Hey, we’re interested. What is the information that you can give us? And that was the document we were given. But there wasn’t any, like you said, like pictures or a little tutorial video that the research program that we went through put together. It was, here’s this giant packet. Read through it. Let me know if you have questions, I will answer your questions and then you tell me yes or no if you want into this trial. So we were able to ask questions and they were always able to answer them thoroughly and in layperson terms. |
| D | Yeah. Just sort of the logistics of it though. The office here where we live is not like the scientist branch of the whole thing that, that was Moderna doing it there. So it was more of we were asking the administrative people questions, which was super helpful for a certain class of questions. But for another class of questions, you know, they aren’t the researchers. So they, they couldn’t really speak to that. |
| A | Not to mention you have to know what questions to ask in the first place. |
| D | Yeah. |
| B | So this is a little bit of a sidetrack, but definitely related. Did either of you ever do a PRACS study? |
| D | No. |
| L | No. But you did, didn’t you? |
| B | I did like 12 or 15 of them. |
| L | Money in college, right? How did you approach that as like as a very young adult in, because it was in undergrad, right? |
| B | Yeah. |
| A | And for our listeners who don’t get the regional reference, PRACS is? |
| B | They do I believe it’s phase two clinical trials, which is |
| L | Efficacy essentially, right? |
| B | Efficacy. Technically bioavailability. So I think that they did a number of comparing brand name to generic. They did clinical trials for FDA approval of new medications coming on the market. I asked because I’ve got a lot of familiarity with all of the informed consent like this is what they ask you. This is what they need to know. This is what you gotta sign and initial and date the bottom of every damn page because that’s what the FDA needs to see. |
| A | To be fair. You had a bit of it invincibility complex when you were in college. |
| B | Oh boy, did I. |
| D | I think the institute knows that and that’s why they set up in a college town. |
| A | That’s why they are in a college town. 100%. But did you, but what about you? Did you read through the stuff or was it mostly a Q&A with a real live human? What was that typically like for you? |
| B | So on the intake for PRACs studies, a human walks through it and you have, you can’t say yeah. You can’t say uh-huh. You have to say yes or no. |
| A | Wow. |
| B | It’s super regimented in that way. The paperwork for what you are consenting to has sections that are completely not of interest to you. And then you’ll get to like side effects. Ooh, let’s see what we got here. We got diarrhea. Okay, that’s nice. |
| A | You did get to do like a morphine thing once though. You kind of dug that, didn’t you? |
| B | Uh, no. it was actually probably like naloxone, something like that. It’s a opioid blocker. And that was in the less pleasant of my studies because |
| A | You’ve never been able to look at beef stew the same again. |
| B | Oh boy, yeah. I had the actual drug instead of placebo and they fed you beef stew. I was just like, that’s great, that’s great. I think that, I could be wrong. I think that part of it was that they had to give you morphine and then they gave you naloxone or whatever. And there wasn’t really a happy time from morphine. But like the naloxone like I remember laying down and like my head was doing this and my stomach was doing this and I was just like, oooooh, earning my money this time. |
| A | Benton is gesturing by making a spiral motion with his hands. |
| B | Swirly move with my hands. Right. |
| L | Okay, but I’m curious, we joined a trial because we wanted protection for our children and for ourselves then, you know, with the Omicron booster like it was so motivating, the health of our children. Why did you join a trial? |
| B | Money. |
| L | Yeah. |
| B | That’s the whole thing. They were looking for healthy subjects. They were looking for healthy participants to do these studies. And the benefit you get isn’t like a vaccine trial where you actually get a health benefit. |
| L | Benefit, yeah. |
| A | Lab rats. |
| B | You rent your body out and sure. They’ll feed you and house you, and then they’ll pay you at the end. |
| A | Which is, it’s good that they pay you. But I can also see how inequitable that could be. |
| B | Oh yeah. |
| A | Because people who need that money are maybe going to disregard some legitimate risks. Were you guys paid? |
| D | Not yet, but yeah. You do get paid. |
| L | You do get paid, which to be honest to me, feels kind of icky, especially like for our son. Ew, this is not at all why I’m doing it. And yeah, we can put it into a savings account and he can have access to it. |
| D | Right? But the thought of like spending it on pizza delivery is like what, that feels so twisted. |
| B | Thanks, son. |
| L | And looking at for you Ben, you could say, I’m a college student, I can give a weekend of my time, earn some money, and it doesn’t interfere with my classes. Maybe like the majority of the time. Right? |
| B | Largely, yeah. |
| L | Yeah. And for us, like going to a clinical trial, I don’t understand who can participate in this besides people who are essentially like upper middle-class with jobs that are so flexible because I’m a stay-at-home mom. I could make an appointment anytime, drive my child in and David works from home, and so we take turns flip-flopping. Okay. You go to the trial site first. When you get back, you watch the kids and I’ll go. The amount of flexibility and privilege we had even to participate, that immediately takes away a giant pool of the population who is never going to participate in a trial. |
| D | Or could, or just, yeah. Like in the case of the COVID studies and the medical upside, like there’s a benefit that just isn’t available to |
| L | to a whole bunch of people. Yeah. And Abi, you were saying that for a certain population of people, they might really need the money and be willing to overlook some significant side effects or associated risks. And there’s also the flip side, you know. |
| A | Yes, yes. |
| L | You would think it would be more profound to have a vaster range of socioeconomic populations, racial populations, right? The barriers to getting into a trial, you would think have to then affect results in some way. And in my mind, I’m like, I think the vaccine trials would’ve been even better, right? Because people in lower socioeconomic settings were often the essential workers who were out there getting COVID. |
| A | Good point. |
| B | Working class. |
| L | We like, in a way, feel guilty. Oh, we got these vaccines and we just stayed home in our bubble. So like our data didn’t even really measure to the extent it could have had that spot been given to someone else whose child was in a daycare setting or who cleaned hospital rooms. Does that make sense? |
| A | Totally. And it comes back to how do you design a trial to be equitable? And that conflicting with the speed of we gotta get this done. We gotta get this available. Yeah, I, I’m glad I don’t do research in that particular realm. |
| B | And I think that there’s an awful lot of institutional inertia on that because I mean, what was it? It can’t be more than a couple of decades that the pharmaceutical industry was like, Oh, maybe medicines affect men and women differently. It was initially designed to be very practical for the researchers. Like, at a university. You can rope in students for a study for extra credit. It costs you nothing and you get a lot out of it. |
| A | This is why IRBs were created. |
| B | You get people of a certain age. You don’t get people who are not at the same college in that way. |
| A | Representative of the population. Do you have any thoughts about how it could have been done differently to get that wider participation? |
| L | My first thought is their only, their hours are seven to three or something, right? So like evening and weekend hours to have the research site open. |
| D | And transportation too. But you did get reimbursed with like a gas station gift card, which presumably would pay, that’s the transport they’re paying for. |
| A | If you have a car. |
| D | Yeah. Right. If you have a car and you have a Super America by you. You know, like if they would call the Uber to your house, that takes you there, that would have been way more helpful. |
| L | Give a public transportation voucher instead of a gas card, a gas gift card. |
| D | Or just bring the study to your house, like have the worker, the NP or whatever come to your house. |
| L | You can do blood draws and give vaccines in home, yeah. It blows my mind that the only reason we really heard about it was through a friend and it’s on their website. Who is going around googling for research institutions, trying to find studies to participate in? I don’t know what the ethics are of spending money to advertise, or put up little flyers with tearaway numbers or something like, but how can you get even the information out? |
| D | Facebook ads. |
| L | Yeah. Laughing just because Facebook destroyed your parents. |
| A | Oh no. |
| L | How would they, yeah. |
| D | One of the things they could also change is you don’t get paid until the very end, which there’s probably reasons for that, but that’s not helpful for someone who needs to make rent. |
| B | Graduated payment. |
| A | I like how you’re describing both logistical things that could make it more accessible and also acknowledging the human side of it, right? In terms of, you learned about it through someone you knew and trusted. And I think for a lot of communities, essentially a stranger coming in with the white coat clipboard kind of setup, that is not conducive to trusting that situation and thereby missing out on a potentially very real benefit. So in terms of the communication around the trial, it seems like one point of intervention could be getting the word out about it in the first place. And like being creative about the venues for getting that message out. But also like we were talking about with the informed consent piece, say you learned about the trial, but how are you going to feel informed enough to make the decision that’s right for you. And on that side, I’m curious too what could have helped in your case. I mean, yeah, maybe you want the dense booklet for transparency purposes, but for practical purposes, is there something else that could have helped you feel more confident in your decision? |
| D | I think having somebody not paid by Moderna explain it to us went a long ways. Well, actually several people, Here’s how the studies work, Here’s what the real risks are. And then just the vaccine in general, where the economic incentives were more clear and seemed more in our favor. I think that helped a lot. |
| L | And I’m thinking too, the first opportunity we had was for our child. And as a mom, I was thinking about like, wondering like how traumatizing is it? And to have known another parent who was also in the trial or had gone through something like that, or even seeing a video, maybe of a child getting a blood draw. I had never seen a baby get a blood draw before. He was really young. And even just that reassurance of seeing a child around my kid’s age go through an appointment would have been so comforting to think, Okay, that’s what it looks like. We go to these rooms, That’s how you hold the baby when the baby gets its blood drawn. Because otherwise your anxious mind starts swirling and projecting and picturing like when they do the blood draw, they probably have to strap a Velcro strap around every limb and around their head. And the child is screaming and they won’t let you be in the room. That’s where my brain was going and in reality, he sat and his torso was against my torso and I hugged him. And there were two nurses and one had like stickers and a little Daniel Tiger video was playing and the other nurse did the blood draw. And she was the one who her previous job was drawing blood from mice in labs. And I’m like, well, if you can hit a mouse vein, you can hit my baby’s vein. And she did. It was, it was quick. Did he like it? No. He cried and his body, he stiffened his body, like aaaagh. He obviously didn’t like it, but it was so much less scary for both him and me than I pictured it being. Yeah. So how could I have gotten past that? Seeing another family go through it even if it was in a video. Now, if it was like a gross, old, cheap looking promotional video from Moderna, would I have believed it? |
| D | Yeah. It would have to come from the right source. It would have to come from, like you said, another mom being like, Okay, come with me. Here’s what it looks like. |
| L | This is why I love talking about our experience and why I’m happy to be on this podcast. I tell everyone that we were in these trials and we would do it again. And I think I will. I get invites now, like in my email, |
| D | The second there’s an RSV vaccine, yeah. |
| L | There’s an RSV vaccine trial right now, but it’s only for age 65 and older I believe. But yeah. So we would totally do it again, but I just needed to know someone who had been through it. |
| D | Well, and some of the Twitterverse was helpful there too, because there was like moms giving their experience with it and describing in whatever it is, 142 characters or less, what their experience was. |
| L | I told Abi I joined Twitter specifically for an account from an anonymous woman, but it was all about parents who had kids in the trials. And so you could ask questions of them. How did it go for your kid? What should I expect? How long did the appointments take? And it was so informational and comforting. |
| A | Oh, that’s brilliant. And that seems like such a productive use of social media for health information. |
| L | Yeah, it really was. |
| A | Because that is the kind of perspective that only another patient or only another participant can give. |
| B | Actually social media. |
| D | Yeah. I mean, my understanding and opinion of social media has changed so much through this experience, like I was super critical when Lindsey first came to me and was like, here’s this lady on Instagram talking to me, I’m like, Oh, Instagram influencer is giving you medical tips. Right? But like I mean, it’s good to be skeptical. But we found it like an actually useful tool, which is not necessarily a narrative you hear where social media can be good and useful. Especially when traditional media is so garbage and not useful these days, to be able to find a source of hopefully good information that was very relatable and humanized was, I don’t know. It’s not something you, you don’t expect Instagram to be that. |
| A | It’s a different kind of credibility. |
| L | Having put my child in a trial and put myself and my spouse in a trial. It has made me actually so much more trusting of pharmacological interventions and medicine, vaccines. And I’m surprised by that, but I just like, knowing the rigor of the trials, the amount of information I have to submit to them every week is way more than I thought they ever collected. If my youngest son has a day where he seems off and I have to give him a dose of ibuprofen. I have to record that with them. I have to say he had an off day and I gave him a dose of this medicine on this date at this time. And they have this giant file of information that they can then look at and put together in a dataset to find correlation or causation of side-effects or long-term issues. And knowing now all of the information that they do collect, it makes me trust all of the, what do I say? Like medical products that are on the market |
| A | Yeah. |
| L | Far more. Truly. |
| A | Kinda reminds me of like, if you think that there is widespread voter fraud, go work an election. |
| L | Yes. |
| B | You know, get trained as an Election Judge, and then you’ll know. |
| A | And it also suggests that initially, like you are far from being a science denier, right? And yet there is, there was that sense of distrust. Which again, that’s saying something, that there are reasons, there are historical reasons to be suspicious. And yet those don’t negate the very real benefits and protocols in place to make trials trustworthy nowadays. So I guess I’m just trying to say it’s complicated. |
| Yeah. | |
| B | Yeah. It kind of sounded to me like the corporate and financial things were what clouded sources with distrust for you guys. |
| D | I mean, that was a big one. Who’s paying you to say this, if anybody, right? A lot of the people that we ended up trusting aren’t getting paid at all for it and are doing it in their free time. |
| A | Okay. So you would do it again. Is any of your interest in clinical trials linked to that kind of bigger picture of this is how we contribute to society in general, or was it largely individual? |
| L | It was, for me, it was like the individual benefit. And in hindsight, I’m very proud now to be participating. I’m super proud of it. |
| D | It started entirely being individual benefit. |
| L | Which to me would be like the motivating factor for most people to want to participate in trials. If you or a loved one is affected by something. |
| D | Right, yeah. And if there hadn’t been a pandemic, I would never have enrolled our kid in a in a clinical trial. |
| L | Yeah. And now knowing what we know, I would do it, yeah, for the benefit of society at large. And a little part of me is like, I acknowledge that, how do I say this. I want to rebel against my parents essentially. They’re part of a group of people that I would really like to move away from. And the only way we can move away from the way they think and the choices they make is to push in the other direction as hard as I can and participating in the exact thing they don’t believe in. |
| A | I mean at least you saved the rebellion for adulthood, cause if you’d gotten it all out of your system as a teenager, who knows? |
| D | There’s a little left in the tank. |
| A | I’ve known Lindsey and David since high school. So I can attest to the fact that you were not rebellious. Not that I know, that I know of. |
| L | No, not at all. |
| B | Do you feel like you are more civically minded now as a result of, I suppose there’s the participating in the trial, but there’s also the pandemic kind of had a very “we’re all in this together” |
| [music: “We’re all in this together”] | |
| L | Yes. Yeah. He, David, I’m just volunteering information about you now, never got the flu shot before this. |
| D | Well it’s not that I never did, it was real spotty. |
| L | It’s like if it was convenient, if they were like at work, I would get out of my cubicle and go get it, but he wouldn’t go out of his way to go get it. And now he’s like What was I thinking? I have a responsibility to children and elderly people and immune compromised. |
| D | Yes, I was an idiot. Yeah. |
| A | I haven’t gotten my flu shot yet for this year. And I also think I’m eligible for the new booster. |
| L | Are you three months out from your positive test? |
| A | Not quite, actually. |
| L | Then you are not yet. You might as well wait. |
| A | You would be though. |
| B | I probably would be. |
| A | Go get boosted. |
| B | My shot schedule started months before yours anyway because I was an essential worker at that time. |
| A | Now you’re inessential. Who needs you? |
| B | Yeah. Who needs power? That’s not important. |
| A | Electricity, just to clarify. |
| B | Electricity, yeah. |
| A | Okay. Is there anything you would want to say to someone who’s on the fence about getting vaccinated or getting boosted. Now that you’ve done all this reading, processed all this information. |
| L | This is where I hit a huge roadblock because I know those people. Well, I don’t know people who are on the fence. Who are they? Where are they? I don’t think they exist, Abi. That’s where my mind goes. That’s how cynical I am about it now. |
| D | No, I think you run into ambivalence like me with the flu shot previously, you’re going to find people who it’s inconvenient to take the time out of your day. It can knock you out for an entire day afterwards. Like if you have to work a shift on Friday, you probably can’t get it on Thursday. So where it is inconvenient. |
| L | You know, David has a jam band that he has been trying to participate in in socially distanced ways, which has been incredibly difficult where we live. |
| D | Played bass in the back of a minivan. And we ran like a 100 foot cord out of this guy’s basement. So I could sit in the back of our minivan in January in Minnesota to play with them. |
| A | Wow. |
| L | And they had like headphones and a video going. |
| D | It was pretty ridiculous. |
| L | But you did it for a reason. They didn’t want to get boosted was it? Or they got the J&J and then they didn’t want to go out and get an mRNA vaccine after that? |
| D | No, it wasn’t that, it was |
| L | You told them I cannot come to jam band unless you get that dose man. And he was like, ugh, okay, and went and got it. |
| A | Hey! Social pressure for the win. |
| L | Yeah, you put into action was you had someone who is on the fence like, it’s not convenient for me and you’re like, I’m not going to hang out with you until you do it. |
| D | Yeah. That’s not a great position to be in. No part of me liked that. |
| L | He could have said no. |
| A | No, but you have every reason to set that boundary because you’ve got young kids at home. |
| L | Yeah. Who at the time weren’t vaccinated and |
| D | Yeah. Which I mean, he totally understood and there was no resistance at all to the idea of doing it. And he even went out of his way. He’s like, Well, which one do you want me to get? I was like, Okay, definitely go get this one. |
| A | Oh my gosh. |
| D | And so he had to drive to the airport. |
| L | So social pressure is your answer? |
| D | I don’t know. Even a, even a recommendation as you think would be so straightforward as like yes, go get boosted. It sucks that it’s so complicated, right? Because like for some people that’s just not feasible. |
| B | They’re not in every pharmacy. |
| L | You have to schedule ahead of time. |
| B | I was bringing our oldest to get, we were gonna go get a flu shot and her booster. We got there and the pharmacist was like, Oh, yeah, we don’t have the one for kids here. And you probably will need to go to this store and you’ll need to make a reservation, and |
| A | Which we did. But again, that’s an inconvenience and I think that’s a great point is to isolate where is the resistance coming from? Is it purely logistical? If that’s the case what can you do to support people? If it’s more ideological, that’s I think what you’re getting at Lindsey. |
| L | Yeah. |
| A | Which is much harder to break through. Darn it. I thought you would have the answer. |
| D | Sorry. |
| L | When I saw on your agenda that you are going to ask that question. I was like Pffft, let me know when someone comes up with that answer. |
| D | Yeah. I mean, yeah. If you have the means to go get vaccinated. Go do it. Like, it’s like Ben was saying, It’s your civic duty to do so. Go do it. It’s mostly for you because of, well, how the vaccines work but it’s for, it’s for vulnerable populations. It’s like you get it so that the guy who can’t miss the shift of work, if he’s not gonna get it like you are giving him some of that protection. So that’s why you should do it. It’s a 1000% civic mindedness. |
| A | Yeah. Is there anything else you want to share? Or you? |
| B | I do, since I, since I’ve got you guys here. Now being home more, is there anything that you guys have done hobby wise or personal interest wise that is |
| A | That you get nerdy about. |
| B | That you, yes. |
| L | I mean, I shared mine before, which was researching COVID and vaccines and things like that. Like I actually had to talk to my therapist about like this can’t be your hobby, Lindsey, you can’t spend two to three nights hours a night, reading research papers and beyond that, what do I do? I play in a symphony, and I’m starting that in the end of October again. |
| A | Can you two somehow figure out how to meld bass guitar and viola, and like create a jam band of your own? |
| L | I keep on telling him that his jam band needs to learn 70s, golden 70 songs and I would be their singer, I would do that. |
| Music: “If you love piña coladas” | |
| D | Oh, vocalist. |
| L | Yeah, I’d be a vocalist. Sure. I’m such a boring, classically trained musician that I’m like, I don’t, I have to have music in front of me on the page to play my viola. But I would be your singer. What about you, David? |
| D | I’ve been trying to finish our detached garage into a wood shop. I’m going to try and build guitars. |
| L | So he wired it for all the electricity, all the outlets. |
| D | Yep. Passed my city inspection. County inspection. |
| B | Very cool. |
| D | Putting up sheetrock now, I did all the insulation and everything. So it’s been a lot of YouTubing to figure out, I’m not a very handy person. So to figure all that out, |
| A | Tactical technical communication. |
| B | Mm-hmm. |
| A | Alright. Well, thank you so much, again, it was great to chat with you. |
| L | Yeah, thank you for having us. This was great. |