Why did we lose trust during the pandemic? - CLL Support

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Why did we lose trust during the pandemic?

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lankisterguyVolunteer
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Why did we lose trust during the pandemic? My conversation with Kelley Krohnert

KATELYN JETELINA MAR 14, 2024 “Your Local Epidemiologist (YLE)” yourlocalepidemiologist.sub...

I am very concerned about declining trust in science and public health. Although there have been many polls and much talk at conferences, one big thing has been missing: listening to people whose trust we are losing.

This has been really hard for me to approach. I’ve been in the trenches for the past four years, so it’s personal, still very raw, and the bruises still feel fresh. When am I ready to listen? Who is genuinely interested in giving constructive feedback without it turning into a finger pointing match?

Well, I didn’t have to look around to find the answer. Kelley Krohnert reached out to me. I was familiar with her, as she was a strong voice on social media throughout the pandemic. Although we have a lot in common (both moms, in the South at the time, both data-driven), we disagreed loudly. It took me a few days to decide whether I was ready to respond. But I eventually accepted her invitation, and we met on Zoom. Much to my surprise, it was a constructive, respectful discussion. Some of it was hard to hear. Some of it I wasn’t surprised to hear. And, we still disagree on a lot, but I am genuinely glad we had this discussion.

We didn’t record the conversation, but I asked if she could summarize her points below. Why did we lose trust during the pandemic?

Take it away, Kelley…

Everything sounds like a sales pitch

From Paxlovid to vaccines to masks to ventilation. Public health sounded (and still sounds like) a used car salesman for many different reasons:

Data seems crafted to feed the pitch rather than the pitch crafted by data. Overly optimistic claims weren’t well-supported by data, risks of Covid were communicated uniformly which meant the risks to young people were exaggerated, and potential vaccine harms were dismissed. Later, when it was time to pitch boosters, public health pivoted on a dime to tell us vaccine protection wanes quickly. How did we get here?

Data mistakes. For example, when CDC claimed Covid was a top 5 leading cause of death in children based on flawed data. How can people give public health the benefit of the doubt when such obvious data mistakes were made?

Messaging inaccuracies. Messaging was so poorly worded that it caused people to misunderstand and start their conspiracies. For example, recommendations to get the bivalent booster 2 months after your last dose led many people to think that boosters were being recommended every 2 months.

Mixing advocacy with scientific communication. Many people pretend to be unbiased scientists or journalists, but instead only share studies that support their claims and attack any other perspectives that don’t meet their interpretations or values. The latest example was a long Covid discussion at a recent congressional hearing, and one of the top long Covid doctors saying, “The burden of disease from long Covid is on par with the burden of cancer and heart disease.” There was also a flyer handed out with some statistics taken out of context. (Other scientists have since refuted it.) It’s sometimes hard for people to know who is a straight shooter and who is an activist.

Information that would have been helpful was never provided

I could never find a basic guide for people about how to take care of themselves, their children, or their parents with a mild/moderate case of Covid. Practical, helpful, and simple recommendations like: Does staying hydrated help? Should I use over-the-counter fever reducers as needed? What are signs to watch out for? NPIs and vaccines were pushed to prevent Covid, but that didn’t help already sick people stay out of the hospital.

I also expected more investigation into children and young people who experienced severe Covid-19. Covid-19 has a huge age gradient, with kids least affected—but some kids were affected, and parents never heard what specific risk factors were the biggest concerns. Instead, all risk factors were treated equally, which meant that people at high risk didn’t realize it, and those at lower risk were overly fearful.

Everything is misinformation, so nothing is misinformation

Many opinions were treated as undeniable facts, and anything that went against that was dubbed misinformation, when they were often just a different reading of the evidence or a different value judgment based on the evidence. Many things were not as black and white as claimed. People sharing legitimate harms of school closures or post-vax myocarditis risks were all deemed to be promoting “misinformation.” Like the boy who cried wolf, this makes it hard for public health to be trusted when countering verifiably false claims.

A disconnect between what I experienced on the ground and the narrative I was hearing

While some people did get very sick from Covid, and many doctors were indeed traumatized by this, many people knew few, if any, people who were hospitalized or died from Covid. While hospitals were dealing with the worst cases, a lot of the Americans weren’t affected in the same way. People were sick for a week or two and recovered, and subsequent infections were typically uneventful. Messaging from CDC like the recent tweet claiming “your next infection could be your worst” just isn’t credible for people who experienced a fairly ordinary illness from Covid.

Some things are improving

I have started seeing some change, which is why I reached out to Katelyn in the first place:

For example, the CDC now has a blog with more plain language and is responsive to the conversations on the ground. The latest entries are refreshing to read. For example, this one where they properly contextualized the burden of Covid this past winter.

Also, the updated guidance on Covid isolation catches up to where much of the world has been for a while now.

Bottom line

From Kelley: I’m glad Katelyn was willing to speak with me. I’ve been trying to reach out to those who I often butted heads with about Covid, and try to build bridges, because I think it’s important to help public health understand the perspective of many of us who lost trust during Covid. We don’t have to agree on everything to have a respectful conversation.

From Katelyn: I was toying with whether I should insert my opinions throughout this post, but in the end, I wanted to listen. I admit—I made some of the mistakes above and her points reflect some of the lessons I’ve learned. But I also know that public health poured their heart and soul into the emergency. I hope we can bring the lessons learned forward— both positive and negative. In fact, I would argue, we have no other choice.

Love, YLE

P.S. I had many thoughts, reactions, and opinions during and after this conversation. I’m sure you do too. Please be respectful in the comments to help facilitate hard but important conversations.

“Your Local Epidemiologist (YLE)” is written by Dr. Katelyn Jetelina, M.P.H. Ph.D.—an epidemiologist, wife, and mom of two little girls. During the day, she is a senior scientific consultant to several organizations, including CDC. At night, she writes this newsletter. Her main goal is to “translate” the ever-evolving public health world so that people will be well-equipped to make evidence-based decisions. This newsletter is free, thanks to the generous support of fellow YLE community members. To support this effort, subscribe below:

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SofiaDeo profile image
SofiaDeo

I know I got disgusted when it seemed pretty obvious IMO that politics in the US was affecting statements made.

Standard SOP for any coronavirus would be to assume respiratory transmission and take appropriate precautions. IMO if this had been disseminated/urged, along with the handwashing/sanitizing mandates, AND if our then President had shifted into whatever legislation he needed to impose to have manufacturing in the US start cranking out PPE, we may not have had to "shut everything down".

We hadn't "shut everything down" during severe influenza outbreaks in the late 1900's, things were affected certainly, but society didn't grind to a halt. Please correct me if I'm wrong, but I was under the impression that when SARS-COV-1 was affecting Asia and Canada and a few other countries, masking was done along with some other modifications, those countries didn't shut down completely. Tourism was affected, but people weren't locked down to the extent they were asked to with COVID-19.

Of course, the fact that the original SARS (as well as MERS) was more lethal, and the fact that the R naught/transmissibility for SARS-COV-2 is much greater than those others, affects things. They can't be simply one-on-one compared, since they aren't close to identical.

But making sweeping public statements, then backtracking on them, was awful. Especially when the initial statements contraindicated known general facts regarding coronavirus transmission. And now that it's politicized in the US and elsewhere, we have care providers who previously had no problem getting hepatitis and other vaccines, and wearing masks around immune compromised patients, refusing to do so.

Rogerinhorn2015 profile image
Rogerinhorn2015 in reply toSofiaDeo

I am still reading politics in opinions. We will never move forward if that continues. Please don't inject politics on this site it breeds mistrust for me.

Justasheet1 profile image
Justasheet1 in reply toSofiaDeo

Sofia,

There was enough blame to go around. From the second I saw this thread I knew that the political opinions from different camps would make me cringe.

Let’s all agree to disagree and move forward.

Jeff

SeymourB profile image
SeymourB in reply toSofiaDeo

SofiaDeo -

Some places did shut down completely in 1918.

history.com/news/spanish-fl...

Others stayed open despite the warnings and held, notoriously, Philadelphia held a Liberty Loans Parade:

smithsonianmag.com/history/...

An excellent read about the 1918 Flu is John M. Barry's The Great Influenza

en.wikipedia.org/wiki/The_G...

Other cities had repeated epidemics from mosquito-born Yellow Fever until mosquitoes were discovered to be the carrier, and public health laws were passed to ban standing water and mandate proper water supply and drainage. For the last couple of decades, New Orleans has been replacing broken wooden pipes installed over a century ago in response to Yellow Fever. Yellow fever quarantined entire neighborhoods.

countryroadsmagazine.com/ar...

=seymour=

One particular orange president did a lot to undermine public confidence in the medical scientific community, along with many online conspiracy theory peddlers..I, for one, wish I'd been able to get vaccinated 3 weeks earlier! I was confirmed covid positive 2 weeks before my vaccination appointment! Probably because of having Waldenstroms, it hit me hard. 12 days in hospital+ 6 months daily physio before I felt something like normal..

Just a little research of the history of vaccinations shows how effective they are. There are unfortunately always a few who will have an adverse reaction to a vaccine...in thecsame way some people are allergic to certain foods, but overall statistics are extremely convincing! I'm sure medical science will eventually reach a point where they will know who is at risk of having a bad reaction.

Rogerinhorn2015 profile image
Rogerinhorn2015 in reply to

Please leave personal political opinions out of the equation. Credibility will never be restored unless this is eliminated. I am not comfortable reading these on this site.

in reply toRogerinhorn2015

When a government heads up a response to an epidemic, its inevitable that a response about trusting advice and take up of vaccination is going to elicit a degree of political response.. I remember a discussion with a union rep when I was young and naive. I'd said I wasn't interested in politics. He replied " that may be true, but politics is interested in you". I do apologize for the very slightly pejorative colourful answer, but otherwise stand by my reply.

Kvb-texas profile image
Kvb-texas

Maybe the best summary ever! Well done! I think we can restore trust if our institutions are more transparent the next time… and they don’t shut down legitimate debate. I totally agree with your hope of “bringing the lessons learned forward”. And we also need to rebuild a lot of bridges.

Big_Dee profile image
Big_Dee

Hello lankisterguy

Outstanding discussion topic. The hyperbole over the covid measures turned a lot of people into anti-vaxers due to fear which was not necessary. At the same time some people had very good reasons for not following all the rules and being ostracized for it. One size does not fit all, not even in medicine.

SeymourB profile image
SeymourB

I read Your Local Epidemiologist, and Katelyn is setting a great example by listening and not simply reacting.

Erosion of trust in institutions predates the pandemic. We have to be aware of and resist the mechanics of Social Media algorithms that create echo chambers. We badly need thoughful skepticism and not emotionally triggered refusal to consider. Focus on issues, not personalities. I know I've been guilty of knee-jerk doubt.

=seymour=

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