Episode 1: Disinformation and healthcare with Susannah Fox

Stories of Disinformation

Rachel told the story of disinformation in ancient Rome: Octavian’s campaign against Mark Antony.

• The Propaganda of Octavian
• Fake news about Antony and Cleopatra
• BBC: A brief history of fake news
• A short guide to the history of fake news and disinformation

Dan recounted the story of how the Department of Homeland Security is manipulating search engine results… Or are they?

• The Guardian: A mirage of mass deportations
• Gizmodo: A little bit of HTML doing a lot of work

Interview with Susannah Fox

• Susannah's Web site
• Rebel Health, Susannah's book (affiliate link)

Lenses

Interrogable

Information ecosystems sometimes keep participants in the dark, preventing them from understanding more about the information conveyed. While opacity in a system can make it easier to understand, preventing users from becoming disoriented or overwhelmed, it also does not invite users to think critically about the information presented.

• How does the system invite users to interrogate the information being conveyed?
• In other words, how does the system make the "invisible" visible, so that it can be interrogated?

Self-Regulating

In peer-to-peer patient support communities, there are mechanisms that allow community members to indicate the reliability of posted information. If online spaces are like gardens, they should be community gardens, where any participant can contribute to the health of the information. 

• How does your system allow participants to regulate the information within the system?

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Personnel

• Dan Brown, Host
• Rachel Price, Host
• Emily Duncan, Editor

Music

• Turtle Up Fool, by Elliot

_____________________________________________________

Personnel

• Dan Brown, Host
• Rachel Price, Host
• Emily Duncan, Editor

Music

• Turtle Up Fool, by Elliot

_____________________________________________________

Unchecked is a production of Curious Squid

Curious Squid is a digital design consulting firm specializing in information architecture, user experience, and product design

Transcript

SPEAKER_02 0:00

People are thirsty for these answers. People are thirsty for community. People are thirsty to be able to share what they know. How might we create information resources that are safe?

SPEAKER_01 0:18

You're listening to Unchecked, the podcast about the architecture of disinformation with Dan Brown and Rachel Price.

Rachel 0:30

Hi, Dan.

Dan 0:31

Hello, Rachel.

Rachel 0:33

How are you?

Dan 0:34

I'm excited to have this conversation.

Rachel 0:36

So am I. This week we talked to Susanna Fox. Can you tell us about Susanna?

Dan 0:42

Susanna Fox is the author of a book called Rebel Health. And so our focus today is going to be on disinformation in the healthcare space. Susanna specifically thought about sort of peer-to-peer information sharing among patients in the healthcare space. I think it'll be a really interesting kind of starting point for us to look at disinformation in that space and how we as information architects can think about our role in shaping those spaces.

Rachel 1:13

Incredible. But first, before we jump into that, we're going to step back for a couple minutes and talk about what the heck we mean when we say information architecture. I'm sure that many of our listeners are really familiar with information architecture, have their own definitions. It's a running joke in our field that we don't all agree what it is. So this is a high-risk segment for me to try and propose what IA actually is. But for some of our listeners, you may be thinking, oh, this sounds mystical and exciting, and I want to know more about what it is. And all those things are true. But Dan and I are going to talk a little bit about what we mean when we say information architecture on this series. So during her keynote at the information architecture conference in 2021, author Jamie Bruce Hoff said everything around you was architected by another person, by a human being with thoughts, opinions, fears, beliefs, misconceptions, lived experiences, and limitations. Switching back to me now, information architecture is the discipline of managing those unruly thoughts, opinions, fears, beliefs, et cetera, in order to make intentional decisions about the structure of an environment so that that environment is understandable, coherent, and navigable. Now, Dan, you'll notice I have not explicitly said anything about it being a digital or physical environment yet, because it can be either. I also describe information architecture to beginning students as really a way of seeing the world. To me, information architecture is primarily a way of seeing the world. And more specifically, IA is the structure of an experience, mostly digital, while we're talking. We're probably mostly talking about digital experiences like websites, apps, software, that sort of thing. And information architecture is explicitly designing the clues, the signals, the boundaries that let a user make sense of that environment, of the information that they're experiencing, the things that help a user figure out just what they are looking at. What can they do in this space? Information architecture is making sure the meaning that was intended when you built that space is the meaning that comes across. We can look at a couple other people's definitions that I think are helpful. Abby Covert, an information architect, her definition is the practice of deciding how the parts of something will be arranged as a whole. And Interaction Design Foundation says that information architecture is the discipline of making information findable and understandable. To get really tactical, it usually includes searching, browsing, categorizing things, presenting relevant and contextual information to help people understand their surroundings and find what they're looking for online and in the real world. So all of this to me, Dan, speaks to identifying parts and pieces, figuring out what shape they are, what they're made of, what their intent is, and then figuring out how to string them together in such a way that somebody can walk up to those things and go, oh, uh-huh, I see what you're doing here. I can take this and do something with it.

Dan 4:53

That's good. I like that. You said this earlier that it's important to point out that there's a lot of controversy in our space about what the definition of information architecture is. And that is to some extent because information architecture itself is new and because it's a little bit ambiguous as to kind of what it is, a little squishy, we might say. But I also think it's because of the kinds of people that practice information architecture. Absolutely. It's important, I think, to understand that information architecture as a practice has multidisciplinary roots. That a lot of the stuff that you're hearing from Rachel comes from a library science sort of foundation, but linguistics and cognitive science play a big role. Psychology plays uh a really big role in information architecture as well. I don't have the formal library science background, information science background that you do, Rachel. I come from a user-centered design background. So my entire career was very focused on user-centered design. So I like to see information architecture as how does it play a role in the design of digital experiences? I think of it as the part of that multidisciplinary effort to shape the space and usually digital space that we invite users into. One of the things that I think is really important for us to understand is that by shaping space, we're not simply creating places for content to live, but we're creating virtual digital spaces for people, users to participate in information. And I see it as very participatory. Sometimes I feel like that angle gets a little lost in the focus on findability and navigation and stuff like that. But we're creating spaces that are social, that allow people to make contributions. We're creating spaces that are transactional. And all of those spaces, even if it's not information flowing out, need to be architected, need to be built or designed in some way.

Rachel 7:30

So for folks who maybe want to get a little more concrete than philosophy of information architecture, information architects can do all sorts of things. I do things like design the navigation on websites and apps. I do things like decide how all of the different features of a product should be organized into a system that is usable and navigable, meaning people can find their way through it. Information architects also do a lot with content management and thinking about metadata on content and the structure of content. We do a lot of user research. We talk to a lot of people about how they consume information and how they ask questions of the world and try to find answers. Information architects work on search a lot, how people literally use search to find things. I'm sure I'm missing quite a few.

Dan 8:25

Those are really good examples. So let's let's move into disinformation.

Rachel 8:29

Yeah.

Dan 8:30

Why should we as information architects care about disinformation?

Rachel 8:35

Because we have the word information in our title.

Dan 8:39

So here's what I think what drew me to it. Many practitioners in our space are naive, and I am right in the middle of that. I had this notion that the spaces that I designed were immune, maybe it's a one-word, from information that was poisonous in some way, right? Immune from information that was problematic. In the last, you know, let's call it 10 years, we've seen the manipulation of online spaces to achieve ends that were not originally intended for those spaces. I'm talking about the proliferation of misinformation about things that are going on in our world, diseases, right? COVID, uh, a lot of misinformation about that, for example. All of that misinformation, from my perspective, seemed to be an infestation. And yet the space itself that was designed by somebody was welcoming, is not quite the right word, but sort of the space enabled that misinformation to proliferate. And then with the election cycle, most recent election cycle, it felt like misinformation just went haywire. And it now feels like as folks like you and me are designing these spaces, we need to assume that misinformation is going to be present. That we need to assume that the spaces that we're designing are going to be abused in some way. And that changes my job description, I think, to some extent. That makes me have to think differently about how I do my work as an information architect.

Rachel 10:22

The a little bit silly image that's coming to my mind while you're talking about this is designing a garden for the day it is done, and you get to walk away from the project, and it's like beautiful and wonderful. And then designing the garden knowing that for me in Seattle, like Himalayan Blackberry will be growing in that garden by the spring. Birds will drop seeds of invasive plants in that space. And you plan your design and you also plan your work and your stewardship with the knowledge that there will be active work you have to do to maintain a space that is not being exploited by an invasive plant in this case.

Dan 11:07

Exploitation is a really good word, I think, for that. In our last episode, we talked about this idea that disinformation is actually not a thing, it's not a noun, it's a verb, right? Disinformation is the manipulation of information space to exploit it in some way to some other end. And we talked about things like harm or profit or chaos, right? There's all these other ends that are disruptive in some way. And when we talk about designing information spaces that are resilient, we're talking about creating spaces that do their best to avoid being exploited in that way. So we've talked about information architecture and we've talked about disinformation. We're using this phrase ecosystem a lot. And I wonder if we should hammer out a little bit what we mean. I was a philosophy major in college, and my philosophy pref professors would be so proud that I am defining my terms. So when we say information ecosystem, what do we mean by that? How are you thinking about information ecosystem? And we're going to be using that phrase a lot, I think, especially as we get later in the in these episodes.

Rachel 12:19

When I say information ecosystem, I'm using that as a catch-all, like an umbrella term for the places where people are exchanging information. So that could be like a digital product, you know, that could be blue sky, X, you know, social media, news, websites, where information is quote unquote published. I also think of the agents that have roles in the exchange of that information. So like people like you and me who are just consuming information, people like you and me who are looking at the structure of that information and asking questions and launching podcasts about it, people who are publishing that information for various reasons with different intents. You know, I think you can look at who all the actors are and what actions they're taking and why. And then I look at all of the interactions between those things. So, what are the interactions between various actors, between actors and various products or places? That's my definition of information ecosystem, so that I can talk about in general the whole space and the places and the people and the institutions that are part of this space and the interactions they're having with each other.

Dan 13:28

You used the analogy of a garden earlier, and I really like that because we can think about the ecosystem of a garden, the system of a garden, right, is the soil, the space around the house where the garden is, where and how it gets sunlight, and the people who use and participate in maintaining the garden, and that garden is part of a larger ecosystem, and that larger ecosystem is part of an even larger ecosystem. So when we talk about the information ecosystem, you could think of it as literally the entire internet. But I think for the purpose of these conversations, that's not what we're talking about. We're talking more garden or let's say neighborhood level information ecosystems. When we talk to Susanna later, I think we're going to hear some good examples of an ecosystem that consists of the more formal places where health professionals get their information. You use the word agents, right? The folks who participate in that ecosystem by posting or consuming uh information that's posted there. So it'll be really interesting after we talk to Susanna about that space to kind of apply this lens and see, okay, how would we characterize this ecosystem that we're talking about?

Rachel 14:46

But first, before Susanna, we're gonna spend a little bit of time in each of these episodes on misinformation stories from back in history and more recently.

Dan 14:56

When we say history from back in history, what is the line?

Rachel 15:01

Um, the year I was born.

Dan 15:04

Are you saying that I am an ancient historical figure?

Rachel 15:08

I'm saying what's history for me might not be history for you, and that's fine.

Dan 15:11

I do feel like in this topic about which we're speaking, the internet I was gonna say, I think it's the internet age is a fairly clear fault line, but also social media. Oh in the good old days, we had like 10 great years of internet without social media, and we Gen Xers, we think very fondly about that time when it did seem like the internet was going to change the world strictly for the better. But anyway, I do feel like there is this line that's tied to the proliferation of social media.

Rachel 15:44

Yeah, because I think the purpose of the quote unquote back in history stories is to examine misinformation outside of the current context of the deeply exploited social media environment.

Dan 15:56

Aaron Powell And to acknowledge that this is not new, right? Disinformation is not a new thing.

Rachel 16:02

Yeah.

Dan 16:02

But what's new is maybe how pervasive it is.

Rachel 16:07

How has the ecosystem changed?

Dan 16:09

And I think our store the stories that we have chosen for today provide a really good illustration of this. So why don't you you're doing history this time.

Rachel 16:18

Yes. We're gonna go back to circa 44 BC for this one. We're in Rome. Marcus Antonius, aka Mark Antony, and Octavian are going through a rough patch. Mark Antony has abandoned Octavian's sister for the beautiful and very non-Roman Cleopatra, queen of Egypt. I know. Octavian is notably displeased by this and launches the first of a very long series of propaganda campaigns against Antony and their once strong alliance is falling apart as they now become rivals for control of the Roman Republic. So Octavian was a master at propaganda, and he ultimately used propaganda to convince the people of Rome that uh Mark Antony was a traitor. And we all know how the story ends. If you've seen any of the movies' stories, but whatever, uh, you know, Octavian prevailed. Both Shakespeare and Elizabeth Taylor ended up kind of reinforcing this narrative that Antony lost his mind over Cleopatra and lost it all in the process. And meanwhile, Octavian became the first emperor of Rome. So we kind of know the big story, but what I think is so interesting about this story is the form of the propaganda campaign, which I did not know and I find this fascinating. Octavian was aware that he needed to turn public opinion against Mark Antony. And he did some of the things that you would expect, like reading inflammatory things out loud in the Senate House and deploying messengers to literally spread his speech like far and wide. Fairly predictable, straightforward stuff. But Octavian also knew that big long speeches and missives were maybe a little bit clunky and only for a particular audience. And he needed something lighter and pithier, maybe something that would spread a little bit faster, maybe something like a tweet. So in this case, Octavian had brief, sharp slogans written on coins to portray Antony as a womanizer and a drunk. Also, theatrical performances and poetry to paint Antony as an unfit, lovesick traitor. Really standard stuff. It worked. So ultimately, Octavian prevails, becomes the first emperor of Rome. Antony and Cleopatra are written out of the picture as like these like doomed lovers. Plays and books and movies, this is the story, the end.

Dan 18:44

It doesn't sound like we can definitively say that the propaganda campaign was single-handedly led to Octavian's ascent, though.

Rachel 18:54

True. The reason they pulled this was mostly that uh when I saw that Octavian had decided he needed to release like very short sentences with very hard-to-miss messages that would travel quickly and go really far. He chose coins and plays. And that really, I was like, oh, so much less of this is new than I thought. Like I knew propaganda wasn't new. I thought tweets were relatively new, and now I'm thinking, like, oh no, they're really not that new.

Dan 19:28

Yeah, plays are the television of ancient Rome, and coins are, yeah, let's call it the social media of ancient Rome. And I love that he was like, what is something people carry around with them? Let's look at this through the ecosystem lens. He's also sort of repurposed a thing that was not used for information, i.e., a coin, and said, How can I use this? I mean, we're projecting a lot, right? But how can I use this to help my cause? And I think we see this a lot of sort of repurposing social media again, uh away from its original intent. Maybe a pretty good analog is a bot, right? A thing that is simply set up to exploit the fact that lots of people are looking at this and it's easy to post stuff there. But we never set up social media to allow bots to be able to participate in it in the first place.

Rachel 20:22

Yeah. The other thing I'm left thinking about is I realize I am not a scholar in ancient Roman context. So I could be getting a lot of things wrong here. But in my context of today, coins feel very official. Right. And that not just anything gets stamped on them. Now, I'm assuming that maybe this wasn't quite the case back then, but there still feels like something more permanent or more official seeming when you stamp a message on a coin that I'm thinking about.

Dan 20:56

That was a great story. We go from 44 BC to 2025. So just a couple of months ago from when we are recording this. I found this story. And what I loved about this story, I hated everything about this story, except it got me thinking a lot about the definition of disinformation. And does this count as disinformation? So this was originally reported in The Guardian. I'll put the link uh in our show notes. So, pretty early on, like within the first month of this uh second Trump administration, there were these tons and tons of news stories uh about mass immigration arrests. We're recording this in mid-March. We're actually starting to see more of this kind of stuff happening, but certainly early in the Trump administration, there were news stories going on. We saw a lot of news stories about it. These stories describe these sort of very difficult scenes of ICE agents infiltrating workplaces and communities and rounding people up. And when you did a search on Google, a lot of these stories came uh right to the top. They were confirmation that these raids were were happening. And according to this article in The Guardian, these searches returned a deluge, that was their word, deluge of government press releases. So you heard these stories and you did a Google search and you got some confirmation that these raids were happening all over the country. The press releases describe raids in Colorado and Wisconsin and Louisiana and Massachusetts, literally everywhere. So to look at the these search results is really to get this impression that there is this just enormous crackdown on immigrants. And that in a sense, these the agents themselves are this kind of tidal wave sweeping the country. But when you start to look at these press releases more closely, you start to see that these are actually raids that happened in the past, some as long ago as 2010, 2008, 17 years ago. Wow. And to read from the Guardian article, uh, this is a direct quote: all the archived press releases soaring to the top of the Google search results were marked with the same timestamp and read, quote, updated January 24th, 2025. So the only thing in the press release that was different was this kind of date stamp was added to it about when it was last updated. Uh the Guardian reports that this was first noticed by an immigration attorney who then contacted a technology expert and they started looking into it. The Guardian got in touch with Immigration and Customs, who didn't give a comment. They reached out to Google for a comment, but it was non-committal. And it started to seem like it was part of a larger PR effort to kind of buff up the new administration's image of being really tough on immigration. So again, these raids weren't actually happening, but to do this Google search suggested that they were. And it was only after digging a little bit could you realize actually, this was just stuff from a decade ago. And they were doing a lot of this very performative stuff, right? There was TV crews following ice raids. The new secretary of Homeland Security uh puppy killer Christy Nome was photographed wearing an ice bulletproof vest. I mean, it was all very Hollywood, very performative. A law professor spoke to The Guardian and called this kind of a strategy of fear-mongering. They said the optics of these mass arrests throughout the country have real ramifications. People started to get scared. And they go on to describe the situation in Idaho, of all places. There was a major raid, apparently, in Idaho that rounded up 22 people, sadly, but it happened back in 2010. According to this article, arrests in Idaho are extremely rare, according to an immigration attorney based there. That made more sense to me. But again, it seems really sad that this news starts to pile up, and even in Idaho, people start to get worried to the extent that the sheriff in one of the counties had to reassure folks that there were no ICE raids happening, that these claims were completely unsubstantiated with no evidence to support them. They started to do some more digging. They found that ICE's web pages had been updated to include a timestamp, so not just a date stamp, but a timestamp. But Google, maybe that's enough to trick the search engine into thinking there was a substantial update. And so they needed to bump up the search results. And this starts to get into the question of is this disinformation if all we're doing is we're tricking the algorithm into thinking this content is more recent or more important than it is. Here's where it gets interesting the tech expert surmised that this was done on purpose, right? That they purposefully made this change in order to manipulate the algorithm.

Rachel 25:57

No way. I'm shy.

Dan 26:00

I know that I was happy to read it, you know, given what I think about everything, I was happy to read it like that. But at the same time, the Guardian changed its headline. They have a correction, they ran a correction, changing their headline, removing the implication that the government was manipulating the search results intentionally. And that's because this kind of change was made to a lot of different kinds of pages, not just about the ice raids. Gizmodel, another online technology magazine, did some more digging in their article. They said the mix of old and new information, free of context, contributes to the breakdown of the information space we're all experiencing. As Musk roots through the federal government and Trump suggests even more grand and bizarre policies, it's important to be able to reliably hunt for current news. ICE and Google's systems have made it hard to do that. Unlike The Guardian, Gizmod was able to get a statement from Google, and this is the statement. The explanation here is very straightforward. The website in question added an archived content bar to many of its press releases from 2024, that is, in the previous administration, and before, which is why the dates were updated in search and as they were on other search engines as well. So the point they're making is they made a change to these pages to say this is archived content, and that was enough to trick the algorithm into thinking this is important enough to now post. It wasn't just the timestamp or the last updated date that pushed the results to the top, but adding another innocuous piece of information, ironically, this is old content. That's what the information was, and that's what pushed it to the top. So one can question the intentionality, right? Or whether the intent was actually uh nefarious or part of this larger sort of push to make it seem like these horrible things were happening. And so I came away from this, like you, kind of immediately thinking, okay, here's a bunch of folks who are trying to manipulate the system, the ecosystem that we're talking about. And then on the other hand, maybe it really wasn't that and was just from their perspective, a quote-unquote accident.

Rachel 28:20

Once again, Dan, you've really taken me on an emotional roller coaster. I never really wish I was a lawyer, but right now I kind of wish I was a lawyer so I could interrogate this question I have of like, where's the line between taking advantage of and exploiting and accepting a happy accident and contributing to misinformation on the internet?

Dan 28:43

A lot of the formal definitions we see of disinformation incorporate this idea of intent. And I am now suspicious of that that disinformation must include intent. It seems like it has to. I mean, because then it feels like it could be anything. But there was no intent here, at least that we can prove. But it still counts, in my opinion. A system was manipulated and achieved an end that really caused harm. It hurt people genuinely and created chaos. I'm glad we are having these conversations because I don't think this is the last time we're going to question what we mean when we say disinformation.

Rachel 29:32

Yeah, and it brings back the idea that these things are verbs. Information goes on a journey and there are agents involved, and there's one path where this happens, and then the institutions that maybe incited the panic see it happening and go, oh no, we have to fix this and do something to clarify the context. And there's another path in which the institutions do nothing to clarify the context.

Dan 30:01

I feel like this is a good setup for our conversation with uh Susanna, which involves institutions like knowledge about medical matters, health matters, and patients trying to fend for themselves. So today we get to talk to Susanna Fox, who is the author of Rebel Health. Susanna, thanks so much for joining us.

Rachel 30:28

Glad to be here. Can you tell us a little bit about the information spaces you're involved with and maybe that you've studied? Sure.

SPEAKER_02 30:37

I came up through early internet website building and have always been really interested in how the internet is democratizing access to information. I worked in the startup phase of real networks and US News and World Reports online offerings, and then switched gears and became a researcher where I was studying what was happening at the intersection of the internet technology and American society. And information is all about what was happening at that intersection.

Rachel 31:12

And based on your work published in Rebel Health, which was a delightful read, by the way, you discussed in that book quite a bit about information in healthcare and the channels for information in healthcare. Let's talk a little bit about how outdated beliefs become misinformation in healthcare. Can you give us some examples of that? Yes.

SPEAKER_02 31:36

HRT, for example, it had been long thought that hormone replacement therapy caused cancer among women who were post-menopausal. That is not true. That needs to be updated. The people who were at the forefront of asking questions about that were people who were going through menopause and dealing with the symptoms. And it took a sea change to convince doctors that they needed to update what they were saying to patients. Another example is in cancer. For example, there is a friend of mine named Dave DeBroncart who was diagnosed with kidney cancer. And when he went to his oncologist at a top hospital in the Northeast, they were not sure that they could recommend a treatment because the published literature had not as promising statistics as they would hope. Well, Dave was lucky enough to have gotten an information prescription from his doctor to join a peer-to-peer group of fellow kidney cancer patients. And they said, Oh, that information that your oncologist is looking at is outdated. We have the latest information that many more people are living through this treatment. The survival rate is higher. So we, the patients, recommend that you go for it. And he's alive today, more than I think 15 years later.

Rachel 33:10

Incredible. You've mentioned two channels of information in that story: published the literature and peer-to-peer groups. One thing that Dan and I are interested in investigating is what are the characteristics of different channels of information and how do we interpret those characteristics to decide whether or not to use that information? Now, as you're talking, it seems like a safe assumption that for the most part, practitioners are using this published literature channel as this key reliable source. And in the story about Dave, you know, you're talking about him going to this other channel, this peer-to-peer group. For those of us who maybe haven't read Rebel Health, can you tell us a little bit about those peer-to-peer channels and how would you describe them and how are they maybe different from other more traditional channels of healthcare information we might be used to?

SPEAKER_02 34:03

I love the creative frame of your question because it's asking your listeners, asking your guests to think about what term might we use. So I use peer-to-peer healthcare as a way to label the second type of information. I would say that clinicians also use peer-to-peer healthcare. They also use peer-to-peer information. Their training is to rely first on published literature, to search a database, look at what is the latest review on something, and read an article and believe, as many people do, that that is the last word on that topic. But the most savvy clinicians are also in constant conversation with other specialists, whether online or offline, whether they're going to a conference and talking in the hallway with their colleagues, or they're joining online discussions. So I don't want to let clinicians out of this. I don't want to push them out of this conversation because what I've seen is that the best clinicians are also consulting each other about what's really going on with this topic. What's new because the internet allows us to capture the conversations among patients, survivors, and caregivers, we can now make visible the conversations that might have happened in the waiting room among patients who share the same condition, or in real life, if you were lucky enough to meet somebody with that same condition. What I have seen in my research is that when someone gets a new diagnosis, especially a serious diagnosis, they have some choices to make. They could go along with what their clinicians tell them. They could be passive, they could accept what is being given to them. And that very well might work out for them. They could also be a different kind of person. They could be a kind of person who's always going to be asking questions. Or things could go sideways. They could have chosen the passive option, but then the treatment didn't really work. Or they don't have access to it. And that's when they need to turn into a curious person. In the patient-led revolution, I say you're going to meet four types of people. And the first group I talk about are seekers. Seekers are not getting answers to their questions. They go out on the hunt and they don't give up. And they consult both published literature and peer-to-peer conversational information.

Dan 36:49

I like that you talk about clinicians, they are also peer-to-peer. I remember a few years ago, I had the privilege of doing some user research for it was like an online training for health professionals. And I did some, and the user research revealed that when people had a question, they would just call up a friend. They would phone a friend. In this case, it was just another doctor that they knew. And I'd forgotten about that until you mentioned that. But as I'm sort of picturing this information ecosystem in my head, it's peer-to-peer on the clinician side and peer-to-peer on the patient side. And it feels like there is a wall between them. When I hurt my shoulder a couple years ago, I got four different opinions from four different doctors on whether I needed surgery or not. But it was up to me to go seek that out, right? And I had to go through the whole thing of making appointments, getting scheduled, things like that. But it's high friction, right? There was it's hard to go do that. And I'm fortunate that I can make those kinds of arrangements. I guess what I'm getting at is it feels like part of the information space is set up to make some of these interactions more difficult for patients than I would say than they need to be or that they should be. As you were talking, I was just thinking about how the formality of what we're dealing with and maybe the authority of some of these clinicians is cordoned off from patients. As I'm talking through that, does that resonate?

SPEAKER_02 38:25

It does. I'm also thinking about how there are different levels of access to different types of expertise. Right. So not only in your case did you have to do the work of finding these second, third, and fourth opinions and getting there and gathering that information, that is akin to someone getting access to the internet, understanding how, for example, to search PubMed, which would give you excellent access to the published literature, at least the summary, if not the full text of the latest review article that a clinician might also have access to. That's a revolution of the last 20 years that regular people now have access to medical journal articles. What's also interesting to think about is how the river of information that's being generated by clinicians, part of it is in the published literature that regular people now have access to. The elite peer-to-peer conversations among clinicians, most people don't have access to. You have to be an MD to get into a certain conference or to get into a certain online group. On the other side is a whole river of information that's being generated by patient survivors and caregivers. In the best case scenario, we see those two rivers of information coming together. One example that I'm thinking of is also an example from cancer, a patient who was very well known as a networker, the second type of person that you'll meet in the revolution. He interacted with hundreds and even thousands of patients who had this certain type of cancer. And he was recognized enough as an expert that clinician scientists invited him to be on the formal advisory board that decided which were the targets for the next clinical trials for this type of cancer, which is multiple myeloma. The patient's name was Michael Katz. And when he was in the meeting talking about what was the most important next step for multiple myeloma, he was talking about a drug that the clinicians did not think was very important. But Katz said this is the number one topic among patients. And even though clinicians might think this is boring, patients are saying, please, can we do a clinical trial to see if we can reduce the dosing of this very toxic first-line drug? And because of the patient's suggestion, they did that clinical trial. And it was a huge step forward in treatment of multiple myeloma because they found that they could reduce the dosing, which meant that actually more patients could tolerate and survive that first-line treatment in order to go on to the second line treatment. That's one of my favorite examples because it's such a creative way of bringing together two information streams. And it required the humility of the clinician scientist to say, we don't know everything. And it also required the confidence of a patient who says, I do know something that you don't know. And I'm going to speak up on behalf of all of these patients that I've talked with.

Rachel 41:57

You mentioned that this is an ideal scenario. And I love how you frame this that like the rivers are coinciding, right? Where you have a peer-to-peer like patient-led space and the clinician-led space that's converging. And I'm thinking that sounds incredible and rare. And so I know there's this widespread belief among clinicians that the online patient communities are rife with misinformation. What do you say to that?

SPEAKER_02 42:25

There have been studies that look at the quality of the information that is being posted and debated online. One of my favorite studies looked at 10,000 postings on a breast cancer forum. They found 10 that were problematic. What was really cool is that of the 10 postings that were problematic, the community had either downvoted or responded to most of them. In a healthy community, people might post something that is incorrect, that is misinformation, misinformation is posted by mistake, disinformation is posted on purpose. So a patient may have heard something, may have read something, and they bring it to their online community and they say, hey, here's what I've heard, here's what I've read. And somebody else will say, you know, I'm sorry, no, that's not the case. And that's an example where a community can self-correct, that it'll have the antibodies that it needs to swarm a virus of misinformation. That's one of my favorite studies because it shows the strength of a community. I'll give another example of a Facebook group that was focused on people who have an implantable cardiac defibrillator or an ICD. And what they found in analyzing all of the messages that were posted on this Facebook group, they actually found more misinformation. They found half of the advice shared. Was benign or helpful. One quarter of the advice that was shared was actually incorrect, and 6% was controversial. Now, the one quarter that's incorrect, that is sobering. We need to take that seriously. However, even then, the researchers said that this forum provided a succinct, accessible, and well-organized resource of basic information of interest to ICD patients and candidates that they probably would not have found elsewhere. And so to me, that says people are thirsty for these answers. People are thirsty for community and to learn from each other. And ask my kids, I'm one of these people who loves to give advice. People are thirsty to be able to share what they know. How might we create information resources that are safe and arm people with the fact-checking tools that they need, arm people with the ability, like they do on Reddit, to upvote the good stuff and downvote the bad stuff?

Dan 45:12

One of the things that you said in our pre-interview conversation is science is at its best when it is being updated. And I really like that because it feels like the practice of science in a sense assumes misinformation may be strong, but that's sort of what it is. It's something is wrong until science does its thing and makes it right or more right than it was. Part of the, I think, disinformation that is happening is the fact that if science feels like an easy target because it is constantly being updated. Are there things that you've been thinking about that you've thought about or research that helps people feel more confident in science, even knowing that sometimes science is wrong by design?

SPEAKER_02 46:06

I think at the kernel of your question is why I hope to convince clinicians and scientists who are probably already on this bus, right? They already understand that the best science is updatable, and that at the base of science is that we're exploring and we're experimenting and we're discovering and we're building. So that's one part of why I'm passionate about lifting up this idea that people with lived and loved experience have something of value to add to scientific conversations. When it comes to reaching people who might be skeptical of science, you know, you think of moments in life and in the history of our country and our world when there's been uncertainty. And we don't like uncertainty generally. And we fill those spaces with a search for something that feels sure. What I would love to do is make sure that everybody understands that all of life is an experiment. When you are trying to improve the quality of your sleep, and you experiment with not having that afternoon coffee to see if that's going to help you sleep better, you are conducting personal science. And the more that we can have a public conversation about science that happens in labs as well as personal science that happens at home, I think the better we will be equipped for significant challenges like a pandemic when everybody was trying to figure out what the truth was, and it became very frustrating to some people because it seemed like nobody knew what the truth was. People aren't used to that.

Rachel 48:25

And some people, I think, have never gotten over it. You've talked about democratizing access, but it also sounds like we're talking about democratizing input, democratizing having a voice in that conversation and going back to the idea that when we can get fresh information and add fresh information, refresh the science, if you will, democratizing whose voices and whose knowledge gets to go into that refresh also feels very important then.

SPEAKER_02 48:53

Absolutely. I love to point to the rare disease community. And here I would say it is the families as well as the clinicians and scientists. When you look at rare disease, it is all hands on deck because so often it is a life-threatening genetic condition, fast moving, 50% of rare disease affects children. When you go into a rare disease community or a rare disease meeting, you can expect to see moms who have essentially an honorary PhD in genetics or in their child's diagnosis standing toe-to-toe with a top scientist in the same area, asking questions and pushing that scientist to ask themselves new questions. And what I love and appreciate about those sorts of meetings is that the scientists enjoy it as much as the parents because they want to be pushed. They want to understand what is the difference that they're making in these families' lives. And I often say if we design our healthcare system for the rare, for the unusual, it'll serve all of us. I think about universal design. You know, what we found is that when we designed our cities for people who need assistive devices, use wheelchairs, all of a sudden anybody with a roly bag, all of a sudden anybody using a stroller also benefits. That's the way I think about the information ecosystem, that if we can make sure that we're designing it for the unusual, we all benefit.

Rachel 50:38

Rising tide lifts all boats.

Dan 50:40

Hope so. I want to bring it back to the beginning where you mentioned HRT. And having been dealing with some personal experience with HRT, when you sort of start on HRT, you can start with a standard dose, but everyone's body is different. You need to find the right balance that's just for you. And you work with your clinician to figure out am I over medicating, am I under medicating, what's the right balance for me? Because everyone, everyone works uh different. It makes me a little sad to think about how much more experimenting we could have been doing on ourselves. But because of this kind of faulty study about HRT, the science was really, in my view, set back decades because people didn't make use of uh HRT in this way. I guess I see a real opportunity for patients, as you were implying, to really contribute to the science by, as Rachel, you put it, sort of democratizing the input.

SPEAKER_02 51:41

Absolutely. And I think that the more we all acknowledge the experimentation that we're engaging in and help people to understand what are the tools available to them in order to do that kind of good experimentation where you can track. I did a study years ago that asked people, do they track any aspect of their health? And then how did they track it? And we found that most people track using paper and pencil. There's something too, just the really simple paper and pencil, like what is the mystery that you're trying to solve in your life? Do you have access to the data and information that you need to make good decisions about that mystery that you're trying to solve? If there's not good information, how are you personally going to go about getting access to that information? Sometimes it's going to be the information that your own body is generating, as in the example of HRT, as in the example of frankly many pharmaceutical interventions that we have. That's when I think about how important it is that we invite more people with lived experience into the conversations about pharmaceutical drugs, about medical device design, where we start to think about is this really serving the population? You know, sometimes I think about there's so much opportunity for new and improved and safer products if companies and governments can find a way to have an intake valve for all of the conversation that's naturally occurring.

Dan 53:29

I think we have one more question for you. Rebel Health is is fantastic. It meant a lot to me uh personally. Where are you directing your research energy next?

SPEAKER_02 53:42

Well, I am getting back into doing original research. I just fielded a national survey and got the results back. And it focused on two special groups people, either they or someone they live with, has a rare disease or an undiagnosed illness. They're living with a mystery. And so I'm very intrigued by those people because they are being hard hit by this information desert that exists when you live with rare and undiagnosed illness. So focusing on them as well as caregivers. I'm working with a company called Archangels. We did a special sample where we asked caregivers to tell us about essentially their stress levels, about whether they are feeling overwhelmed and the contours of the overwhelm that they might be feeling as a caregiver. And then we asked them, what tools are you using? Are you using telehealth? Are you using AI like ChatGPT or Gemini? And are you going online to find others who share the same health condition? I'm really excited to get into the data analysis and release that data. Those are my roots as a researcher. And after writing Rebel Health, I really wanted to get back into this original research.

Dan 55:09

Susanna, that sounds amazing. I cannot wait to see the outcome of that. Rare diseases are near and dear to my heart, so I'm especially interested in hearing how that goes. Susanna, thank you so much for joining us on this journey.

SPEAKER_02 55:22

My pleasure.

Dan 55:29

What a great conversation that was. Susanna really understands what we're trying to do here, which is yes, look at a particular domain like health, but also the information spaces in which that takes place. So, Rachel, as you were listening to Susanna talk, what are some big ideas that you got from that?

Rachel 55:48

Susanna's incredible. It was really fun to talk to her about her work. But a question that I have that I now want to go investigate is I really want to understand how some peer-to-peer information spaces are mitigating misinformation. They're handling it well. And then some of them are just rife with misinformation. Why? I want to know what is happening in those safer spaces that is not happening in the misinformation rife spaces. And this is where I come back to this idea of like, okay, if I'm thinking about the ecosystem, are there different agents? Are there different activities happening? Why are some spaces self-regulating really, really well and others are not? So that's what I'm really left wondering. Honestly, after we record this, I'm probably going to go do some Googling and see what research has been done about this, because I don't know.

Dan 56:39

Right. And I think it's really interesting that she uses the phrase peer-to-peer to describe kind of an online patient community where we have, as you're saying, all kinds of online communities now, but I wouldn't necessarily describe them as all peer-to-peer, not because they're not sort of all equal participants in some way, but there's something about that idea of it being peer-to-peer, meaning they're all coming at it kind of with the same needs or the same expectations, too, which is different from just your regular conventional, let's call it unregulated online space. Does that sound right?

Rachel 57:19

Yes. And this actually takes me to the second thing I'm sitting with, which when I read the book and when we were talking to Susanna, you know, I actually kind of teared up a little bit during our discussion of these peer-to-peer communities that are helping each other manage and actually kind of inspire or push researchers towards rare diseases. I think that I'm in a segment of people who kind of tend to roll my eyes at Dr. Google, or I did. I've kind of had my eyes opened to the reality that peer-to-peer information communities, some of them really have some unique power to connect people, to allow people to learn from each other and to actually challenge, in the case of rare diseases, specifically, challenge scientists and researchers to think differently about the diseases they're researching. And so I'm wondering when there's a very explicit shared intent in a space, maybe that's one of these variables that promotes self-regulation of the information.

Dan 58:14

It's a really good reminder of how powerful the internet can be. I was five years old when I was diagnosed with my throat condition, and it's considered a rare disease, right? Not a lot of people have this. I actually wrote a memoir last year about having this throat condition. I talked to my mom about those early days, and I asked her about sort of connecting with other parents because I had this memory that we we visited another family where one of the kids had this same condition. And my mom said that she worked with my surgeon, who is obviously connected to, you know, a lot of these families with this disease. She wrote out this invitation and he said he handed it out and she couldn't get any interest in it. And here she was, like trying to build a peer-to-peer community. She, this is very much my mom, like sort of recognized the value of patients connecting with each other or patient families connecting with each other, and she couldn't get any interest. When I look at that, I think of just how high friction that was. There was so much that mom had to write something up, she had to get it printed up, she had to get it to my surgeon, he had to then distribute it to everyone, and then they needed to call her to get something set. There was so much friction there, and nothing ever really came of it. Like we never met anyone. And now, now there is an online Facebook group for my condition, and it's so much easier for me to connect to folks for that stuff. And so it was it was support that she couldn't get back then that is now ridiculously easy to get today. And I look at that Facebook group, there's no no one's peddling any snake oil there, right? No one's no one's peddling any misinformation there. There's like some really good, helpful support, not just for the medical information, but for the emotional toll these diseases can take as well. And I think that's an aspect we didn't really get into with Susanna, but is an important aspect to this peer-to-peer. It's not just everyone has aligned intent, but they all sort of genuinely want to help each other too, because they know what it's like to live with a condition.

Rachel 1:00:30

Shared context, empathy.

Dan 1:00:33

Yeah. We're now gonna put our designer hats on. The whole point of this is to develop a set of tools that we as information professionals can use as we're doing the design work on these spaces. Because of the way my brain works, I think of these as lenses, right? How can we look at the design work that we're doing from a unique or interesting perspective to tell us something new about that space that we need to think about? You came up with a really interesting idea for a lens based on this conversation with Susanna. Why don't you tell us what lens idea you had?

Rachel 1:01:10

The word is interrogable. The idea is this lens asks us, how does the system invite users to interrogate the information being conveyed? Or in other words, how does the system make the invisible visible so that it can be interrogated? In the previous episode, I mentioned I suspect that many of the signals that have traditionally been baked into online content are maybe missing or have gotten so quiet that only a deeply philosophical information architect-like person is sniffing them out. And I think this lens is really about asking yourself that. Because some systems really invite interrogation. An example off the top of my head is maybe Wikipedia that cite invites interrogation by citing things, by putting banners at the top when it says, we don't really know about this. Like, are you an expert in this space? Can you help us out with this? There are a lot of very visible, maybe sometimes obnoxiously visible signals asking for content to be interrogated before you believe it. And then there are other digital spaces where those interrogation signals are not nearly as strong. Like I feel like Facebook is especially difficult to interrogate, but this lens feels very important to me.

Dan 1:02:49

It strikes me as different from just merely transparency as a lens, right? If transparency were a lens, it would say, you know, make all the information that's available immediately visible for everything. And I think you're you're taking a different perspective here, which is not so much everything needs to be visible all the time, but we do need to give people affordances for digging in if they want to.

Rachel 1:03:18

You know, this almost feels like bringing citation chaining to the masses, where you learn to dig into every assumption and see where did that assumption come from and who made that assumption and why. And keep digging, keep digging until you get to like a root source. That's an extreme version of making something interrogable. But this idea that you're not just making it visible, but you're actually inviting interrogation.

Dan 1:03:44

Oh, nice. Okay.

Rachel 1:03:45

How about you, Dan?

Dan 1:03:46

In the interest of transparency, I think we should say that we came up with almost 10 different possible lenses based on this conversation, which has me super excited, but also super worried about continuing this process and generating lots of interesting ideas for lenses. I landed on uh self-regulating as uh a lens. And I think one of the things that was apparent from the stories that Susanna was telling us when I was listening to her, I thought it seemed like one of the important aspects here is that the community regulated itself, such that if incorrect information appeared, uh the community would at the very least downvote it or offer alternatives, or that there was enough self-interest in the participants that they would jump in and make corrections or try and eliminate any kind of uh misinformation. It seemed like there's such a range of communities, but what seems to be something that is important is uh allowing the participants to regulate the information that's available. So if I were to sort of render this as a lens and I were sort of designing a system, I would ask myself, how does this system allow participants to regulate information uh that's available here?

Rachel 1:05:16

And who gets to regulate it?

Dan 1:05:18

And who gets to regulate it.

Rachel 1:05:20

Dan, this has been super interesting talking to Susanna. I learned so much. And our first pass at generating lenses has gotten me very excited and very scared because we have a very long list. Next time, we are going to be talking to Sid Harrell, the author of the Civic Technologist Practice Guide and thinking about misinformation in civic tech.

SPEAKER_01 1:05:53

Unchecked is a production of Curious Squid. Curious Squid helps organizations like yours untack. Complex information architecture and user experience challenges. Visit us at Curious-Squid.com.