Combating disinformation in public health

Inclusivity Included: Powerful personal stories

Evan Thornburg (she/her), Health Equity Special Advisor for the Philadelphia Department of Public Health, joins Reed Smith DE&I professionals John Iino (he/him) and Iveliz Crespo (they/them) to discuss how misinformation, disinformation, and conspiracy theories pose a serious threat to public health. They discuss how it affects equitable engagement of services, causes confusion, creates mistrust, harms people’s health, and undermines public health efforts. Evan dives into the disparate impact that the spreading of inaccurate information has on vulnerable and marginalized communities and their ability to make informed decisions about their health. She also shares strategies that individuals can adopt to combat these threats.

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Transcript:

Intro: Hi, I'm John Iino and I'm Iveliz Crespo. Welcome to the Reed Smith podcast. Inclusivity Included: Powerful Personal Stories in each episode of this podcast, our guests will share their personal stories, passions and challenges, past and present, all with the goal of bringing people together and learning more about others. You might be surprised by what we all have in common, inclusivity included.

Iveliz: Hi, everyone. I'm Iveliz Crespo. I'm your co-host. Uh And I'm joined by our co-host John Iino. Hi, John.

John: Hey, everyone. Hey, Iveliz.

Iveliz: And today we have a very special treat for you. We are joined by my friend and colleague, Evan Thornburg. Evan is currently serving as the Health Equity Special Advisor for the Philadelphia Department of Public Health in the AIDS activities Coordinating office. Evan has previously served as the city of Philadelphia and its residents as the Deputy Director of the Mayor's Office of LGBT Affairs and the Director of Training and program development in the Mayor's Office of Diversity Equity and Inclusion specifically for the Kenny Administration. Evan is an expert in intersectionality specialized in policy and legislative drafting and design, equity based program development, and comprehensive training on diversity equity and inclusion. In fact, Evan has trained thousands of individuals and collaborated with hundreds of organizations and institutions over the last 14 years to provide inclusion competency based trainings. So Evan, thank you so much for joining us today.

Evan: Thank you for having me. Very excited.

Iveliz: And as I, I'm happy that Evan was able to join us. I've worked with Evan in the past when I was with the city of Philadelphia. Um and actually have been able to set in on one of Evan's trainings and I will say it was one of the best DEI trainings that I've ever attended. And so thank you for that Evan and I'm really happy that you're able to join us today.

Evan: Yeah, thank you. Don't, don't oversell me.

Iveliz: Now so Evan, I know that I've known you for several years now and I've had the privilege of seeing you take on so many different roles, right, that advance social justice and equity and in communities across Philadelphia and beyond. As many of our previous guests know and, and you and John and I can attest this work that we do, this equity-based work is anything but easy. It can often be exhausting, right? Diversity fatigue is real. But despite this, you keep championing for those that have been intentionally excluded from various sectors in society. And you know, the big question is why? You know what motivates you to continue to engage in this work that is exhausting.

Evan: Well, I have to ask myself that daily, especially in the current time. This answer I think is separated into two buckets or like two spaces. And the first one is going to be, you know, obviously, or very intentionally, what motivates me is my own thrive ability. I am a queer identified black person. And so I don't know, even if I wasn't doing this on a macro level at a systemic space or a systemic point, I would still have to be fighting in this way individually everywhere I go, right? Because it's that much more difficult when people see someone like me show up into space. So it motivates me because my own survival requires it. But also what motivates me is thinking about how truly, and this is one of the things I really do love about DEI and it goes not well spoken or promoted often is the fact that doing DEI work doesn't improve things for marginalized people, it improves things for all people. One of the my favorite things about like disability activism, for example, is designing things for people with disabilities, doesn't improve spaces for just people with disabilities. It actually makes things easier for everyone. And we've learned that in the pandemic, right? We've learned that even sitting here and figuring out how we can do things like meet and still do our work without having to be able to meet in person and people, disability activists have been saying that for years. And so it motivates me to think about how truly it does and this is going to sound corny, it does make the world a better place, it makes it an easier place and it makes it a more exciting and innovative place. And so I like that element.

Iveliz: Yeah, absolutely. I mean, I think that's one of the biggest hurdles, right is getting people to understand that. Oftentimes when John and I have conversations about DEI or even when we put on trainings on DEI, we often get met with that, right? Uh that resistance that, that hesitance from other people who view it as, you know, you're playing favorites or you're providing special treatment and that's not what DEI is about, right? And I think you articulated that very well that it's about creating workplaces, creating spaces, right? That everyone can be successful in.

John: So, hey, Evan, thank you for joining us and sharing with, with our audience both, you know, your own identity, life experiences. But you know, the special message that I think you want to bring to our audience. So in particular, I guess I'd be curious in terms of what drew you into the public health space and what are some of the issues that exist, you know, with respect to equity in public health?

Evan: Hm. So I've always loved, I actually meant to be pre med in college, but I couldn't get out of the bio class. And that's not because I'm not good at bio. It's because we had this really terrible professor who was just didn't make bio consumable. And I thought for a long time that I couldn't participate in a health care or public health space. I also realized that what I thought was me wanting to go into medicine was me wanting to go into public health. Right? As you get older, you learn more and more about nuance. So public health has always been an interest to me, especially because it's where a lot of equity issues start and a lot of things converge and people don't realize that like issues of employment are still a public health issue because being underemployed and being below the poverty line lead to health disparity. So public health is the core for me, the core contention of DEI work. It doesn't help anyone if we're still operating inside any number of oppressive systems and ultimately it falls on or affects our health, oppression shortens people's lives. So public health felt like the closest I could get to the core. The equity issues in the context of public health are vast. I think historically, we've looked at equity issues in public health as being very, being very myopic and specifically looking at health and behavior. But more and more I really love that people have become more exploratory, especially as the worlds of public health and like biotechnology, medicine and like bioethical spaces have started to converge and collaborate and think about things like gun violence is public health, right? It's not, it's not judicial or it's not just strictly for engaging in um the justice system or policing. It's actually a public health issue. It's relational. I would say obviously like life, quality of life is a public health issue, but also length of life, environment issues are public health issues. So climate crisis is a public health issue and it's absolutely an equity issue. The people who will be the greatest affected by climate crisis are, they have the least footprint or effect on climate crisis and have the least amount of power to disrupt it and they will be the first people displaced. So my answer is going to be to shorten it that everything is a public health issue or everything is an equity issue that exists in public health, whether you realize it or not.

John: That's amazing. That's so much to dive into there. And I can see why your days are so consumed because, you know, when, when everything ultimately comes back to public health and understanding all the equity issues within that, that obviously is an all consuming. So really, I don't know how we're gonna cover all these issues in a half an hour, but it's, it's so great to start, you know, drilling down this uh so many different areas.

Iveliz: Yeah, absolutely. And I, and I think that's something that people don't often think about, right, how these things are all interconnected. So I, I appreciate you kind of highlighting that and appreciate right, that these things, employment and all of that are, are issues that impact public health, inequitable access, rights opportunities, services, all of that, you know, impact people's livelihoods and their lives ultimately and their health. So I guess, you know, Evan, you and I had a conversation before this in preparation for the podcast and we talked about what is the biggest threat right to public health in 2022 a year where we are in the midst still of trying to figure out, you know, uh end game to this pandemic. But also where people are now, you know, most many are still working from home, many are still working remotely and there's just a lot of information out there. And so I know it's something that you've, you, you're very passionate about, you talked to me about. But what do you think one of the biggest threats are given where we are today?

Evan: Controversial, but I think one of the biggest threats because there's several. But I think one of the biggest threats that could affect the other larger threats quite extensively is misinformation, Disinformation, and conspiracy theory. Why I say that is like, it's one of the few that can affect the others because it affects people's choices, behaviors, the way they govern and the decisions that leadership in the world make. Information is very, very important in the integrity of information is very, very important because it's how we make decisions. And if we are not being given either as the larger collective human body or even the collective leadership body are not ingesting the right information, then the right decisions can't be made. And ultimately, people's lives end up suffering because of that. So that's what I would say.

John: That makes so much sense to me. I mean, just in the the world we live in now and you see what some people call fake news and whatever, you know, called all the different, you know, angles of the same facts or, or made up facts and how you characterize different things is just such a problem within, within our society right now. And it's almost like, you know, you see, you know, people saying things like how could they even say that? Right? But then, you know, people are believing them. So I guess to drilling it into what you're saying a little bit earlier, Evan, what, what, what would you say the difference is between misinformation, Disinformation, and even conspiracy theory. How would you distinguish those?

Evan: So there's like, and there's a really great influencer who does a much better breakdown than I do because she has built an entire pyramid of breaking down because each one of these buckets also has its own layers within it. But these three kind of are the biggest coin interacting things. And so I start with misinformation. Misinformation is how one consumes something and then reiterates it. Misinformation is subject usually it lacks a malicious intent. It can end up having a malicious effect, but it's not necessarily being shared or spread because someone is intending to give you the wrong information. Misinformation is usually connected to things like literacy, especially in things like public health, right? Because I work in HIV. A lot of people have a lot of misinformation around like how you can transmit HIV. So for instance, people think that if they are on prep that they cannot contract HIV, and the truth is there is a very low risk, very, very low risk if you are consistent on your prep cycle and that, but it doesn't happen immediately either. You have to be on a prep cycle for a certain amount of time. That's nuanced and a lot of people miss that nuance and ultimately end up sharing misinformation, right? Of no fault of their own. But we have to recognize that a lot of people are operating with literacy levels that are between the 5th and 8th grade level. I think a lot of highly educated people do not realize that and that really has a strong effect on creating accidentally and organically misinformation. So that's one, we have to make things consumable. Otherwise, misinformation will create itself truly. Disinformation is about the maliciousness. This is usually someone who's intending to benefit from people having the wrong information. This can look like everything from like, you know, the kind of holistic all natural health community saying things like, you know, if you sleep with this crystal, I do not want to denigrate non western forms of medicine. I support entirely and I absolutely engage in a blend of them like things like acupuncture, but acupuncture still has a science behind it. Someone who's engaging in disinformation would tell you that your cancer could be cured by taking lavender oil. And if you just go to my website where I sell a highly concentrated form of lavender oil. Disinformation doesn't always have someone benefiting in a way that can, how would I say this? Like benefiting in a way that can harm you. There's no harm in lavender oil, but there is strong harm in telling someone that they do not need to seek care for their cancer. And especially if you're doing that because you're trying to sell more lavender oil. So that would be the example there. And then conspiracy theorist is just um oftentimes, it does denote an underlying mental health issue but not all the time. And when I say mental health issue or it preys upon people with mental health issues. It's very, very useful in times like now where people are experiencing a heightened amount of fear. Long term fear. PTSD. Conspiracy theories can really feed on depression, especially depression that has manic episodes, but it lives outside of the realm of even realism and oftentimes it can really benefit from, and disinformation can also use, utilize or latch on to or target people who consume conspiracy theories. Conspiracy theories often will drive people to do dangerous things like become violent or become or use reactionary and very dangerous language to dehumanize. So conspiracy theory is just kind of like the prelude to violence often. There are some harmless ones. Again, conspiracy theories has a pyramid of its own. But I would say in the course of public health, it truly is very, very dangerous because you are divesting from even reality in a lot of ways and it's very, very hard to address.

Iveliz: So I know we talked about misinformation and disinformation, obviously like many things in the world, there's a disparate impact on certain communities. So can you speak a little bit to that? You know, what communities might be more impacted by misinformation or disinformation or even conspiracy theories.

Evan: The more marginalized folks. And that's for a number of reasons that create their marginalization and their vulnerability. I mean, historically, by po communities have a mistrust of a medical and public health world and that's because of the history that's occurred for them. I mean, specifically black bodies have experienced the extensive amount of research being done on them without consent and that they relate that to both public health and medical spaces in spin fields. So it's easy to activate fear in a bipoc community, especially when it relates to public health and to health care. So they would be the easiest target, right to say this is we're people are using this to kill off black people, you know, or doctors are not going to take care of you. These are all things, misinformation, disinformation and conspiracy theories can really play on that already activated emotional space and every BIPOC person has that feeling, even I sitting here talking about it, had that feeling towards medicalized space and public health. I don't inherently trust it and I work there and also other communities, folks who have issues with cognition. So people who have had things like traumatic brain injuries, PTSD. Long term PTSD can also be targets people, elders, especially because of experiencing things like senility. Alzheimer's aging, anything that comes with aging and mental health, people who have any sort of diagnosed and undiagnosed mental health disorders or neurodivergent, I mean, there's a very vast population but they're all within a vulnerable category. And then people who have aren't experiencing digital inequity. So people who don't have strong access to things like research tools even like the internet, right? So people who are in very rural or isolated sections of the world or are in places that are like resource deserts. And so that would mean that they there's not really good cell phone connection, there's not a lot of wireless connection because that means information is very limited and their ability to question information or access true information is very limited.

John: So in specifically, you hit on this little bit of it as we think about COVID, how has, you know, I think we have all kind of had some experiences as well. But how, you know, misinformation impacted our efforts to combat COVID.

Evan: Greatly. It's affected everything from the ability to get people to engage in self uh and community safety behaviors, like social distancing, like mask wearing and to be sure, historically, the same issues have always existed. there was a huge movement that was anti seatbelts. When the federal, the federal government regulated seatbelt wearing and the installation of seatbelts in cars. There were people who literally did protest the law around seatbelts. So just to understand that this is not uncommon but that this has kind of an explosive effect because of the access to social media and how quickly bad information can uh circulate or misinformation or disinformation can circulate. So the difference is it's kind of in the last 10 years, we've supercharged the ability, the share ability of these things. But the good thing is is that we've also supercharged the share ability of the right information. We just have to figure out how to better manage, design and legislate the spaces where these exist so that these things aren't treated as equals in those spaces. Um I think that's my biggest like complaint around social media is that we can change or we can get the right information to people very quickly. But we have to demonetize or de incentivize the virility and the viral ness of misinformation because social media is by design for profit. And so they'll utilize that whatever makes them a profit. And if it's popular, it's popular. I mean, right now, their profit is attached to popularity and not attached to doing the right thing. But yeah, misinformation, disinformation have undermined people getting the right care and even to the point where people come to the hospital and they are resisting certain certain things like being put on ventilators because of misinformation. And that is changing the trajectory and truly taking people's lives. It's not just the vaccine, it's how we treat COVID, it's how we transmit COVID, every stage and every component of COVID and COVID care has been affected.

Iveliz: You know, and I think that's very true, you know, you mentioned access to social media really has exacerbated some of these issues that we've seen existing in throughout our history, right? It's sensationalized media, right? And, and these campaigns to target certain communities is nothing new, but it is something that has and greatly exacerbated by this access on social media and even how these social media platforms operate by way through algorithms and the like, right? So they're they're feeding you information that you are routinely looking at. And so then all of that information is all that you have access to and all that you're viewing. So I guess my question to you is I think most of our listeners and most people I interact with have encountered, right? Either a family member or someone who is just embroiled, right? And this misinformation and that's all they're listening to. Um what advice do you have for folks that would like to help enlighten, right? Or, or change that dynamic uh That is existing for people who are routinely absorbing this misinformation or disinformation. How can uh individuals, right? Help help with that.

Evan: So that answer differs depending on what the person is encountering. With misinformation, it's very simple and using your interpersonal relationship is probably the best option. Um Oftentimes people who are spreading misinformation don't know it. It wasn't intentional. They're doing, they're regurgitating what they thought was the correct answer or the correct information. And so correcting them is probably more than OK and providing them resources that are more um ingestible and quicker to recall is very, very helpful because oftentimes when people, we have to understand that when people are sharing information, even people who are sharing disinformation or conspiracy theories, the average person who's not benefiting from it in any way, their intention is, their intention is good. Mostly because they want to inform you, even if I'm saying that the government orchestrated JFK's assassination, it's because I'm trying to warn you, right? And so it sounds, you have to hear what their intention is behind it. With disinformation it's a little more difficult because that is intentionally targeting them. And it's for, you know, like monetary or political gain. I always challenge people to look at where something has come from and ask themselves with certain especially shock value information who benefits from this information being distributed. So if I'm looking at a, you know, a public account or a profile on Twitter or Facebook, that's telling me that lavender oil going back to my original example is better for you than cancer chemotherapy. Follow up and see where that account got that. Oftentimes you'll get led back to somewhere where someone's selling lavender oil. If the endpoint isn't an expert in the issue and instead is someone selling something, then that's most likely disinformation and it's there to harm you because a doctor who engages in cancer care is not by and large benefiting from you continuing to experience cancer and being sick. But someone selling lavender oil to you is. So that's where you want to make sure that your end point is always, the resource point is someone who's an expert. And then with conspiracy theories, this is gonna sound very difficult, but it's a diversion because it's a, you've left reality in a lot of ways. Sometimes what's driving that is people's algorithms on the platforms that they're using either it be youtube or tiktok or Instagram. And so I encourage people instead to try and change their algorithm organically. And what that would entail is sharing things that are non-political, non relational. So for example, if my mom is telling me that people tell her that, you know, lavender oil cures cancer trying to fix that for her and that, you know, the cancer is being run by Big Pharma or whatever, knowing that she might like YouTube and that's where she's getting this from. And I also know that she might like you know, all natural soap products and seeing how they're made, sharing with her videos of natural soap being made over and over and over, usually like once or twice daily will change her algorithm without her knowing because she's opening new things and it's shifting her interests. So that's what I encourage, especially for folks try to get something as far away from the conspiracy theory as possible, you know. Send her videos on someone trying different milkshakes. I don't know, very placid things of interest because you can't really take conspiracy theories from people. Unfortunately, their minds are very invested and it's usually activating something like serotonin in their brain related to things like depression. And so it doesn't help to tell them they're wrong. They just dig in deeper.

John: It's so amazing just to kind of analyze how the impact of these algorithms just in terms of, you know, how people get down that rabbit hole can't really get out of it, right? Because of that. And, and so when you talk about misinformation, you know, to me as I start to think about, OK, one of the solutions is that people have to make sure that they are considering a diverse, broad range of opinions and, and the rest. And so not just get wedded to one thing and consider the broader spectrum. And then through that, you know, that you can see what might be misinformation, what might be fact. So from, from an individual's perspective as well, just kind of like how do we paint the picture, the full picture for people so that they can actually see the differences? And as I think, for example, I mean, in the context of like I said COVID, so whether it's the center of disease control, you know, they're, they're saying a lot of facts, they're putting a lot of medical evidence and are they addressing some of the misinformation and disinformation and they don't believe these people that say this, this and this because here's why this is wrong. And I, I don't know if that's, if that's true or not, whether they, you know, they do that. But, and what do you think is an advice for people that are trying to play out and lay out all the very spectrum to say OK, you may have heard X but let me tell you why that might not be correct. Is there, is there any kind of advice there for, you know, how would you as the center of Disease control or how are you if you were, you know, Doctor Anthony Fauci, make sure that you're getting the message out without people. You know, just immediately criticizing it.

Evan: I think one of the, the, the largest critiques I have for people working in any form of government or any place that is kind of what I would say in the Ivory Tower as it were, is that we forget that not everyone lives in the Ivory Tower. I think that's super important is that when you're a doctor or when you're on research teams and all you're doing every day is talking to people who do research and have degrees and masters and PhDs, we forget that there are people who do not have that expanse of education and access to information. Information is a privilege. Education is too. I myself would be in the same boat because I grew up in the same neighborhoods. So I would encourage these organizations to also not think so highly of themselves and these entities and not think so highly of themselves that they're, they think that oh because I'm a doctor, people will listen to me. That's just patently not true for and for many reasonable points. I think collaborating with folks that people do listen to. So for instance, I worked on our distribution, our vaccine distribution in the city. And one of the things I suggested was is that when it comes to promoting vaccine distribution, we need to talk to more than just local clinics, not everybody listens or takes all their advice from a clinician of any sort. I was like, are we talking to faith leaders that is just as important to talk to someone's imam as it is to talk to someone's PCP? Because oftentimes people's decisions in the critical areas of health and health care, they make with their religious leader and for us to pooh pooh it because we're people of science or we're people of, you know, higher education or whatever we think ourselves above something is simplistic or, you know, a lot. I see, I hear a lot of rhetoric around things like religion that are very minimizing, but it could be the difference in life or death to have someone's mom tell them, hey, I think you should get vaccinated or hey, I think you should get screened. We need to start to think about the value of those community spaces more and apply the same value to them that we do to ourselves as experts.

Iveliz: Well, that was just, that was excellent advice, you know. And Evan, I, I wanted to get you on this podcast for such a long time. So I am even more thrilled that we, we did this and I just thought this was very informative and um really important, right? It's something that as you said, transcends, right? Various different, you know, industries quote unquote at all. It all roots back right to the health and safety right and well being of the communities of all communities, right? And, but particularly the communities in which we're serving. So again, thank you so much for joining us today.

Evan: Thank you.

John: Thank you, Evan. It was great to spend time with you today.

Outro: Inclusivity Included is a Reed Smith production. Our producer is Ali McCardell. This podcast is available on Apple Podcasts, Spotify, Google Play, Stitcher, PodBean, and reedmith.com.

Disclaimer: This podcast is provided for educational purposes. It does not constitute legal advice and is not intended to establish an attorney-client relationship, nor is it intended to suggest or establish standards of care applicable to particular lawyers in any given situation. Prior results do not guarantee a similar outcome. Any views, opinions, or comments made by any external guest speaker are not to be attributed to Reed Smith LLP or its individual lawyers.

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