Humans in Public Health: Rebuilding Information Trust

How do we receive the information that shapes our beliefs, and how do we know if we can trust our sources? Professor Stefanie Friedhoff says information is a critical social determinant of health.

In this episode of the Humans in Public Health podcast, Friedhoff and Evelyn Pérez-Verdía of We Are Más discuss their project in Southern Florida that collaborated with 25 leaders in Hispanic diaspora communities to capture and respond to questions and concerns of community members.

Listen to the Full Episode

Megan Hall: 

Welcome to Humans in Public Health. I'm Megan Hall.

In the past few years, the field of public health has become more visible than ever before, but it's always played a crucial role in our daily lives. Each month, we talk to people who make this work possible. Today, Stefanie Friedhoff and Evelyn Peréz-Verdía.

These days, if you’re looking for information, you have millions of places you can turn to. Websites, social media posts, and even this podcast are all part of an enormous and fractured information ecosystem. Some of that info is reliable, and some of it is designed to mislead you. 

Two years ago, a group of researchers at Brown University decided to look at how we get our information as a public health problem. They co-founded the Information Futures Lab to address what they call an information crisis.. 

Stefanie Friedhoff is the lab’s co-founder. 

Megan Hall 01:00  

Stefanie, just to sort of get the obvious out of the way. Why does a school of public health have a center devoted to combating our information crisis? I would think it would be in maybe a political science department at journalism department. Why public health? 

Stefanie Friedhoff 01:16  

In part because information is a social determinant of health. If we don't have good information, if you don't know if smoking tobacco can cause cancer, why would you stop? If you think that vaccines microchip you, why would you take them? So at a very fundamental level, that information we have available to us is a key driver of decisions that we make.

Misinformation is sort of the tip of the iceberg. If we look below that we see that people have information needs, and anybody who's tried to Google something lately will know how hard it is to actually find good information to the questions that you have. But if maybe English isn't your first language, it's a lot harder. 

Megan Hall 01:59

Around 13 million people in the US either don’t speak English at all, or don’t speak it well, and most of them are Spanish speakers.  So, Stefanie and the Information Futures Lab partnered with someone who works with those communities. 

Evelyn Peréz-Verdía 02:14 

My name is Evelyn Peréz-Verdía. I am the founder of We are Más, and a proud visiting fellow here at Brown University.

Megan Hall 02:20

Evelyn is a community leader and strategist, and her organization We Are Más, aims to improve information access for Spanish speakers in South Florida. 

Evelyn Peréz-Verdía 02:30

I've been working with diaspora communities for over 20 years, and sounding the alarms about how it's important to get information to our communities, not only in English, but in other languages that they feel more comfortable with.

Megan Hall 02:43

Evelyn has seen how when information isn’t translated, it can have life or death impacts. Recent reporting showed that when hurricanes hit Florida, almost all of the warnings are in English. 

Evelyn Peréz-Verdía 02:55

A lot of communities go with no warning that a hurricane is coming because the information is not coming out in Spanish, or Haitian Creole.  Like Hurricane Irma, back in 2017, half of 1% of the information was in Spanish. Also in hurricane Ian, it was only 1%. This is actually also a public health issue. People are risking their lives because they're not getting the accurate information in the language that they were born with, that they can understand better than English I know many people are trying to learn English but there's a lot that we still need to do to inform them accurately.

Megan Hall 03:34

Evelyn and Stefanie wanted to find a new way to share reliable information with Spanish-speakers. But to do that, they first had to rethink where people get their information. 

Stefanie Friedhoff 03:45

We used to get most of our information from official sources and journalists. And increasingly people get their information from the sources that they trust, which is family members, which is the organizations that are already serving them such as the YMCA or United Way or Evelyn’s organization. So we really wanted to work on the ground with these trusted messengers. 

Megan Hall 04:07

Last fall, the Information Futures Lab partnered with We Are Más, to put this idea into practice through a pilot program in South Florida.They started with twenty five trusted messengers from the community. 

Megan Hall 04:21  

I think trusted messengers can be sort of a vague term. So can you tell me who were these folks and how did you find them?

Evelyn Peréz-Verdía 04:27 

Well, it's really fascinating because we had individuals from a Colombian hairstylist to the CEO of an organization that helps Hispanic and Latino women become active participants in this country. I mean, the amount of people that we had represented over, probably 60 community groups from, you know, schools to AARP senior citizens to jujitsu class, you know? And a good example is the Colombian hairstylist, she was involved because she actually had been invited to various Qanon channels in Spanish, where she would come to We Are Más and say, “I'm not sure if this is real or not, but I've received this information.” 

Megan Hall 05:10

Each week during the 6 week program, the Information Futures Lab collected questions from their sources.

Stefanie Friedhoff 05:17

people would fill out a survey on their phone very, very simple survey, just asking two questions, basically, what questions do you have? And what rumors have you heard? 

Some of them are questions that you can answer easily, like, how do I get a mammogram in South Florida if I’m underinsured? 

Megan Hall 05:33

Other questions were more alarming. 

Evelyn Peréz-Verdía 05:35

One person asked, is the 2024 election actually happening?

Stefanie Friedhoff 05:40

So then, I had a team of journalists, and we were researching the answers to those questions. We had both local experts and just journalistic skills to find information for people. Then we experimented with, so how do we communicate this back to people, the trusted messengers, right, the hairdresser, the head of the YMCA, where would they want to get this information and that turned out will be WhatsApp. So we produced very short written lots of emojis types of messages on WhatsApp. And then people said, Well, okay, send me this in an audio so I can listen to it on the way home. So we experimented with different delivery mechanisms for information. 

Megan Hall 06:16

Essentially they made a really effective way to collect questions, answer them, and put that information back into the trusted channels people already use.

Megan Hall 06:26

Let's talk about the channels that you were using. I am someone who doesn't use Whatsapp very much. So at first, I was confused because I thought, Wait, isn't this just text messaging my friends? So do you mind explaining how misinformation and WhatsApp connect? And how this information gets spread? For someone who just doesn't use it in that way? 

Evelyn Peréz-Verdía 06:46

Well, you're not alone. You're not alone. Usually WhatsApp is something that is used by individuals who have connections to other countries that use WhatsApp  and it’s their main source of communication. So often, if people don't have you know, other people in other countries here in the United States it’s usually text message. 

Megan Hall 07:06

Evelyn says WhatsApp groups are just groupchats, but they can be huge –  over 1,000 people can be in one group – So information can spread really quickly. 

Evelyn says there are two main ways misinformation spreads in these groups: One is intentional - people join big groups planning to spread information that helps them - creating confusion or campaigning for a political candidate. 

But other times, people spread misinformation by accident:

Evelyn Peréz-Verdía 07:32

The other situation are people who share information, like we say the abuela, the grandmother, the tía, the tío, the uncle, the aunt, that are very concerned about the situation and have these extreme feelings of anger, or happiness when they receive something, and they immediately share it. 

Stefanie Friedhoff 07:52

So if you are a disinformation agent, and you're trying to be as effective as possible, what you do is you create the content, and then you seed it with people who are already in these belief systems. Evelyn was mentioning the Qanon group on WhatsApp. So there's a lot of distribution that happened from real people who are not disinformation agents. But they have increasingly bought into these narratives and those are things that they believe in. So  that's, you know, why they pass along this information. 

Evelyn Peréz-Verdía 08:23

And this is where we talk about the circle of trust. And this is why the pilot was so important. Because the influencers truly are the people within that circle of trust, and family and friends in those communities that can say “actually, what you're receiving, let me share with you what we just got from the Information Futures Lab, let me share with you the sources that we got and where you can find more.”

Megan Hall 08:47  

So what came out of the project? What would you say the impact was that you could tell?

Stefanie Friedhoff 08:52 

Yeah, so we certainly saw the impact with these trusted messengers themselves, who felt they had gotten information that they felt very confident they could share with their communities. They also reported back that they felt they had better abilities to understand how to assess information, the validity of information and clarity and so forth. One of the things that we found is that,  three quarters of the people who participated found the information both more culturally competent and helpful and what they otherwise had access to. 

Evelyn Peréz-Verdía 9:21  

One of our experts was actually Tamoa Calzadilla from Factchequeado. Factchequeado means fact checked in Spanish. And one of the things we found out was that a 2020 story, inaccurate story that said that microchips were in COVID vaccines, was still circulating in late 2023. And that helped Factchequeado say, Wow, we wrote about this story in 2020. So what they did is they updated the story, and said, if you're still seeing this story out there, let me share with you why it is not true.

Megan Hall 9:57

Since the pilot program ended, Evelyn joined the Information Future’s Lab as a visiting fellow. She’s helping other organizations understand cultural context when they’re working with Spanish-speaking communities.  

Evelyn Peréz-Verdía 10:09 

I am working on helping organizations, here in the United States understand about cultural context, how words and symbols may mean something different for diaspora groups who come here and are now active participants in the United States, versus what those words and symbols might be mean here in the United States. You know, like there's the word progresista, progresista, – which, progressive, has a long lineage of meaning here in the United States for a long time. But in Latin America progresista is connected to dictatorships to Castro to Chavez to Maduro. So immediately, these connections make Hispanic communities push away anyone who uses the word, also, the raised fist, which is something that is a symbol here in the United States that has existed for a long time for resistance, for respect, is also a symbol that was used by Castro. Currently Maduro is right now continuing to try to stay in power in Venezuela and he uses it all the time in pictures. Candidates from the left and right, use it also. And I think that that's very confusing to Hispanics. We see here in Florida, more and more Hispanics are leaving both the Republican and Democratic Party and becoming no party affiliation. And oftentimes, it's because they say we don't know who to trust anymore. And I think it's important in the moment we are, where we see so much division where we learn how to unite versus divide with our message with our symbols with our words. And that's a bit of what I'm working on right now, with the Information Futures Lab. 

Megan Hall 11:42 

I want to wrap things up. But first, I can't help but ask a question about the election. You know, it's an election year, there's a lot of misinformation, disinformation, conspiracy theories flying around. So what's your advice to people listening about how to navigate all of this?

Stefanie Friedhoff 11:58 

I think one way to think about this is, think about the bigger picture and the narratives that are being built. We have to put everything in context. So if you hear something surprising, or if you hear something that’s startling, find out, where's it coming from? Who is sharing it? What is the benefit that people have by sharing it? Is it important for us to know and why? I think part of the polarization that we're seeing is related to these like, not just the echo chambers, but all of us having very different information, diets and different sources of information, so and then it is reconfirming. If it feels too good to be true, then it probably is too good to be true.

Megan Hall 12:38

Evelyn I want to give you a chance to respond to that too. What’s your advice?

Evelyn Peréz-Verdía 12:42

Well, my advice is more to the organizations and people who are doing the good work to keep democratic institutions strong in this country is, you know, you have to realize as a nation of immigrants, when you give messaging when you reach out to communities, know the differences between these communities, know that these are hyper local communities that you cannot speak to all of them the same way, that they come with a lens from their country of origin. And they see our government, they see our politics, they see our system based on the way they grew up…And so I think that we need to be a little bit more aware of who we are here in this nation, and try to change those inequities to empower these communities with accurate information that they so much want and need.

Megan Hall 13:31

Well Evelyn, Stefanie, thank you so much for taking the time to talk with me today.

Evelyn Peréz-Verdía 13:35

Thank you so much for having us. 

Stefanie Friedhoff 13:34 

It’s been a pleasure. Thank you.

Megan Hall 13:39

Evelyn Peréz-Verdía is the founder of We Are Más and a 2024 Information Futures Visiting Fellow at the Brown University School of Public Health

Stefanie Friedhoff is an Associate Professor of the Practice of Health Services, Policy and Practice at the Brown University School of Public Health. She’s also the co-founder of the Information Futures Lab.

Humans in Public Health is a monthly podcast brought to you by Brown University School of Public Health. This episode was produced by Nat Hardy and recorded at the podcast studio at CIC Providence.

I'm Megan Hall. Talk to you next month!