A conversation with Dr. Katelyn Jetelina on COVID-19, science communication, and the future of decentralized clinical trials
Dr. Pamela Tenaerts, Medable’s Chief Science Officer, was recently joined in conversation by Dr. Katelyn Jetelina. An edited summary of their conversation is below.
Dr. Katelyn Jetelina, MPH PhD, is an epidemiologist, biostatistician, professor, researcher, wife, and mom. She writes a popular newsletter at “Your Local Epidemiologist” with the goal of “translating” the ever-evolving public health science in order to equip people to make evidence-based decisions.
Can you tell us about how COVID has shaped public perception of clinical research, throughout the pandemic?
What we are seeing right now is science and clinical trial research unfolding in real time for the general public, really for the first time. And that has caused a lot of confusion, misinformation, even disinformation, but it’s also really rewarding. It’s elevating our public to think through what our processes are, and how much we rely on other people to raise their hands and participate in clinical trials.
I think the other thing that people saw is how rigorous our clinical trials are. It's a very detailed process. What's phase one? What's phase two? What's phase three? What's the difference between an EUA and an BLA? I think all of that, and how clean the process has been, at least from the vaccine perspective of development, bodes well for the future.
Do you think that there's a different view now on what it means to participate in clinical trials?
I think so. I hope so. I think one thing that has been lost in the narrative is how many people stepped up to volunteer in clinical trials for the COVID-19 vaccines. I think it was around 500,000 people, and that is mind blowing to me as a researcher. Pre-pandemic, it was hard to find research participants. But people really rolled up their sleeves for these clinical trials, and as a community we really owe it to these volunteers.
How can trials change to make them more reflective of the people living with the disease?
Things have gotten better over the past couple of decades, but they certainly can still improve. And that's going to take a lot of proactiveness from vaccine manufacturers, or even a mandate from the FDA. I think it's also going to take a lot of communication: showing the value of participating in a clinical trial and building trust among communities so that they will participate.
How do you feel we’ve done from a communication standpoint throughout the pandemic?
Well, I do think that our communication needs to be improved. During COVID-19, I particularly paid attention to the fact that vaccine manufacturers were putting out press releases with their data without scientists being able to see that data themselves. I think we need to be very careful with going down that path. Remember, there's value in peer review. We were ill prepared for the pandemic, and in terms of communication, I think that we can learn a lot from it going forward, including other clinical trials and other health diseases that we deal with every single day.
Has communication helped encourage more people to be interested in participating in clinical trials in the future?
I don't know if more people will volunteer themselves, necessarily, but what I do think has come out is the appreciation of those that do. On my Facebook page, for example, when someone says, I'm so excited that this data came out, my kids were volunteers in this clinical trial, the amount of praise and support to that individual from thousands and thousands of people is just incredible. It's an emotional moment, because people recognize that their own kids couldn't get the vaccine without that other kid and that other mom really raising their hand and taking that risk.
Sometimes the people that we need to participate face barriers that exclude them. Do you have any thoughts on how the movement to digital technologies can help clinical trials be more inclusive?
I personally love the use of electronic devices like cell phones in clinical trials. There's a lot of value in that, because the more generalizable that data is, the more people we can get to do it.
However, I think it really needs to be thoughtfully planned out from an equity perspective. If you are texting someone, you are assuming they have a phone, and that their phone has enough money on it to receive text messages, and so and so forth. So, you could still miss a large proportion of people that are simply unable to have those things.
That’s the income disparity, but there is an age disparity there, too. If we want to enroll older people in clinical trials, then we really need to meet them where they are. With time, more people will get comfortable with technology, but there are certainly still people out there that are not comfortable with technology at the same levels, and that could really hurt the generalizability perspective of clinical trials unless it is very clearly tracked and analyzed. But I do appreciate the accessibility, especially from my perspective as a working mom that is way too busy.
What excites you about decentralized clinical trials?
That we can leverage all types of data sources to analyze health outcomes and the impact of interventions, whether that be through electronic medical records, logging, or mobility data, because we can start answering a ton of questions more accurately than ever before. And because of that, our health will only improve over time.
Why do you think some populations don't know that clinical trials are an option for them?
There are certainly groups that have legitimate concerns about clinical trials. To better communicate with them, we must engage them. We need to understand how to approach them, or who might serve as an effective messenger. We also must understand that telling, telling, telling is not always going to be the answer. Engagement is a two-way street, and we need to answer their questions.
I personally hope that people saw how the science community really came together and collaborated throughout this pandemic.
Yes, and it's not letting up. I mean, we're recording this in the middle of Omicron. I have never seen this many scientists burning the midnight oil so everyone can know what's going on and prepare. I think it's just an amazing international community and shows the value of teamwork on every level. These dedicated scientists and researchers, as well as all the people that have volunteered for the clinical trials are, to me, the unsung heroes of this pandemic.
How do you think COVID is going to influence research going forward?
We've never had a disease in which every single scientist on Earth is working towards a solution at the same time. What we’ve seen with SARS-CoV-2 is that level of collaboration can generate beautiful things. Realistically though, that level of engagement isn’t going to be possible with every disease out there. I do think, though, that we have now built very strong scientific teams that are multidisciplinary, and that can work together on other diseases. We now have a very innovative approach to vaccines and we now know that mRNA vaccines work really well. And so, what does that mean for allergies? What does that mean for cancer treatment? I think we can leverage this innovation for other diseases.
That’s one aspect. Another aspect we've really touched upon is that the larger community has been able to see how science unfolds, and hopefully sees how exciting that is and how much it can change our lives. My hope is that this will get them engaged in future clinical trials and research down the road.