Positive Gene Podcast: Telling Our Stories Online: Researching ‘Previvorship’ in the Social Media Era | Season 3 Ep #2

With Dr. Stefania Vicari and Dr. Hannah Ditchfield

(Links mentioned in the episode are located at the bottom of the page)

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Sara

Hello, everyone. Welcome back to the Positive Gene podcast. This is your host, Sara Kavanaugh. 

Today's episode is a little different and very special. While traveling with my family in London, I had the chance to sit down in person with two incredible researchers I've admired from afar Dr. Hannah Ditchfield and Dr. Stefania Vicari from the University of Sheffield. 

Before we get into the conversation, a quick note because we recorded in a conference space in my hotel, you'll notice some echo and background noise to make things clear for you. I'm rerecording the intro and outro here on my studio in Nashville. 

Dr. Vicari is a senior lecturer in digital sociology whose research focuses on digital media participation and lived experiences of health and illness. 

Dr. Ditchfield is a research associate who studies how people use social media to connect and share health experiences with a special interest in women's health. 

Both are part of Sheffield's broader efforts to understand cancer and cancer risk through interdisciplinary research. 

With that, let's head to our conversation in London. I started by asking them about their project and with the phrase pre virus and a platform society really means. 

Dr. Vicari

So a few years ago I was looking at Rare Diseases first and organizations advocating for rare disease, and I was looking at how the internet at the time was becoming a very important space for these organizations to advocate and make noise. So being seen by others raise awareness. And then, you know, it was around 2013 that we had Angelina Jolie about her condition of having the mutation and, you know, her story of undergoing prophylactic mastectomy. So I started looking for new information about how people with spoken about conditions and BRCA became something that I was very interested in, especially on Twitter. And with that, I also got to know more about Lynch Syndrome and the idea of reviving cancers. So basically, knowing that there is a risk, very high risk, that you might have cancer in your life, but you don't have cancer at the moment. Maybe. So you're reviving that. So that was something that I found very interesting and not really spoken about in the wider public debate. At the same time, my expertise is on digital media. And, you know, if you look at what has happened with social media over the past like ten years, they have become something that are very present in our everyday life. And this, this idea that, we are in a platform society. So basically that social media are so embedded in everything we do in a, in a way as infrastructures. So we use them to do so many different things. Now, beyond the idea of just connecting that there are so many different powers in the way they work as well. So they are platforms in the sense that they allow us to say a lot of things that were not said before, but also to broadcast about certain issues, to connect, to build community. But they have so many powers controlling and regulating them. So there are the companies that are giants and very powerful for profit agents, but there are other entities that are trying to govern it or control or control them. So the idea that we are in a platform society, is very centered on the power of social media. So I want. To connect these two very important issues and try and study how social media platforms are important to work for carriers of hereditary cancer Syndromes. 

Sara

I think this is a good time to talk about your study specifically looked at the BRCA genes and Lynch Syndrome. And you know, in our community we have lots of mutations that are, you know, audience members may be dealing with. But you specifically called out BRCA and Lynch Syndrome. Can you tell us why you had that particular focus? 

Dr. Vicari

Yeah. So I mentioned the Angelina Jolie's OpEd in 2013. And then again in 2015 on The New York Times. So when I was reading through this information and what people were saying, especially on Twitter about this and other advocates talking about BRCA, I also read posts by people who are talking about BRCA in connection with Lynch Syndrome. And I quickly realized that actually there are many genetic mutations. and that increases the risk of having cancer, but not some of them are less known or less visible. Because you don't have a celebrity talking about them, basically. So I decided that I wanted to learn more about some of the other mutations and how people were coping with having these mutations and Lynch Syndromes. So became the other focus of my research, and I wanted to look at them together. And as a researcher, I wanted to study, you know, them, but I also wanted to kind of help raising awareness on these other conditions that we don't really hear much about usually. So is there an opportunity for Lynch Syndrome to sort of piggyback on the awareness of predispositions like BRCA because of the Angelina Jolie effect that you just mentioned? Yeah, maybe I could tell the story of I'm not going to name dispersant, but I could tell the story of this person. Perfect. Okay. So while I was reading, tweets about BRCA and I was getting to know, you know, what, certain patient advocates were doing to try and raise awareness about BRCA. I also came across other patient advocates who were tweeting about Lynch Syndrome. So I happened to have a conversation with one of them, and she was explaining to me that, she felt quite lonely because she had Lynch Syndrome, and she found it very difficult to. For this condition because nobody was talking about it and everybody was focused on focusing on BRCA. And so because of that, she decided to connect to the BRCA community and kind of piggybacking with their strength at that moment to try and raise awareness about Ling Syndrome as well. So working together. And at the same time, kind of, using this moment of fame for BRCA to also raise awareness of Lynch Syndrome. 

Sara

Yeah. Well that's interesting. Being somebody who's newer to the hereditary cancer community, not knowing that history. I mean, a little bit here and there, but hearing that connection, how people. One that a lot of people know about Lynch Syndrome in general terms. But I feel like those of us that are learning our way have heard of organizations like Force and Alive and Kicking. But ten years ago, this, you know, there were people who were aware of their diagnosis, but there wasn't quite the platform or the awareness, even within the community, I imagine. 

Dr. Vicari

Yeah. No, absolutely. And, you know, we're talking about 2015 at the time. What was happening on Twitter was pretty powerful. Those patient advocates, especially in the US, some of them were doing an amazing job at trying to raise awareness. Working with other organizations, but also working on their own as patient advocates, telling their stories, but also trying to connect and build community. 

SaraYou mentioned in the last ten years about using platforms, but is it too soon to ask about, from the project perspective, what you've learned about how people use platforms like TikTok, Instagram, you mentioned Twitter or X to share their risk stories. 

Dr. Ditchfield

Yeah. So we've looked at, Instagram, TikTok, Facebook and Twitter, but it kind of changed to X during our project time. I think the takeaway. Like the broadest answer, I guess, is that people use these spaces and platforms in such a variety of ways. so some people really actively post on these platforms, like creating content. They're very kind of vocal, sharing their stories. But people also use these spaces in ways that don't produce. They use them silently, I guess, and they just consume and they read content. Or often the word lurking is kind of attached to this kind of behavior. So they're very present on social media still, but not visible necessarily. So we've kind of been interested in both sides of that kind of use. Obviously every so often we group social media together, but all of these platforms are so different in the way that they're organized in the features that they have. They promote kind of certain types of communication over others. So like Instagram, for example, is very visual. Facebook is much more textual, I guess, and is good for like sharing links and things like that, whereas Instagram is awful if you want to share a link. so there's all these things that kind of shape the way that people typically use these spaces and, and tell their stories and obviously motivations play a big role. So, some people kind of are very personal in the way they use their social media and will tell kind of intimate details about their live show, intimate parts of their body if they can, if they're allowed, some don't. Some draw a really hard boundary, and just kind of use these spaces to learn, educate, raise awareness more in that kind of factual way. so yeah. There is no one answer to that question. People use it so differently. 

Sara

The study was primarily on Previvors, so maybe we take a step back and talk about from your studies perspective what is the definition of a provider in the context of your study. 

Dr. Vicari

Yeah. Originally when we kind of designed a project and we started studying these issues we started from force. So I mean the word revive or I had come across it quite a few times, but then I wanted to retrace where you started and you came up on a force, chart online group. And somebody was saying, you know, I don't know how to label my, my condition because I'm a health person. I'm going to try to explain it to others. Nobody really understand what it means to have one of these mutations. So it's really the story that these different people who were, engaged in this conversation online on a force, online group came up with different terms. And then some of them said, what about revive or so, basically surviving a predisposition to cancer. And that's how the term came along. So when I read it, I kind of embraced it as a term. So that was the starting point of thinking about how revival so people know, or having this high risk of cancer. Cope with this idea of this knowledge. So that was the starting point and kind of working definition that we used when we started working on these topics. 

Sara

Yeah, I think I can, resonate with that because I felt the same way I didn't. You don't want to overstep into the survivor community, but you needed something that did identify it and that that was meaningful to me to find that as well. 

Dr. Vicari

So. And that was 25 years ago. Yeah, it was in 2000 when I realized that it was such a long time ago. I was I was like, wow. It has been around for a long time. and actually in 2007, I don't know if you know that for all you know, it was picked as one of the buzzwords, top buzzwords by the time magazine. It was ranking three. It was in the cover of time magazine.

Sara

Interesting. Yes. Wow. I had no idea.

Dr. Vicari

Yeah, exactly. You know, the knowledge of of this label is not as widespread now, so I don't think it ever picked or it was ever something that became really a thing after that. Yeah. Outside the community. 

SaraYeah. Well, what are you seeing how the term is used across the different platforms. Is there a difference? 

Dr. Ditchfield

I thought this was a good question, because it kind of really made me stop and think. I was like, I don't think there's a difference across platforms necessarily in how people understand the term or how the term is being used or how people feel about it. But one thing we have noticed more, maybe it's throughout our interviews, has been kind of participants from the US seem to be more aware of it as a term and identify with it maybe more strongly. Whereas participants we spoke to from the UK, sometimes they don't even know that it exists. So like it's our project that has introduced it to them, particularly if they kind of use social media and more like closed private spaces rather than kind of following hashtags and things like that. So I think that's the kind of biggest difference is the UK, US, and I can only guess that that's because force coined the term and force is a US kind of organization. Whereas here in the UK we have Lynch Syndrome UK, which is at the foreground of Lynch Syndrome advocacy here. So that's my one observation. Yeah. Can I add something about it. Yes please. I think sometimes people also didn't recognise themselves if they had already had cancer. And we approached them for an interview. They were like, But I'm not. I don't know if I if applies. It applies to me because I have had cancer before. So even if they're healthy at the moment we approached them or they felt like they had switched to the other side. I don't know this this difficult kind of understanding of who you are, as if the label is really identifying who you are as a provider or a survivor, and you can't be the two things at the same time. Yes. Yeah. So people would ask like, oh, do I kind of meet the criteria to take part in your project? Because I'm, I'm not a survivor because I have had cancer, so I'm more a survivor, so can I. Do you want to talk to me? And we're like, yes, we want to talk to you like we're not going to cross you off now. And so it made us like we were thinking like, oh, maybe we should change the name of the project. 

Sara

Well, I think I mentioned this previously too, but somebody who I've had on the podcast has spoken to this before that they, they are a melanoma survivor 20 years ago, but they found out their BRCA diagnosis five years ago. And they more identify with the more recent pre or pre reviving BRCA. Now that does go into the next question here with do participants self-identify with that and or do some reject the term. 

Dr. Ditchfield

Yeah I mean I've not spoken to anyone who rejects it outrightly kind of thing. so I think we've done 58 interviews so I can speak for 58 people. No one rejected it. Some people didn't know about it. I would say most people could or did identify it with. I identify with it in some kind of way. And we did end up kind of interviewing those 58 people. Some are providers in the sense that they haven't had cancer before. Some would more identify with the label of survivor. I guess I think it depends a lot on the route to diagnosis. That seemed maybe to be the what changed it for people. So say if you're diagnosed with a cancer and then you get a genetic test done because of that, because you're young or you're GP or whatever things. Oh, actually, you've got a bit of a family history. Maybe we should do a kind of Lynch Syndrome test or BRCA test. Then they find out that they've got hereditary cancer Syndrome. That's one common pathway. But it can also happen the other way around. So you know that you have you have you kind of come to the choice to get genetic testing. So you know, about your condition and you never have cancer or then you've had cancer. So there's so many different ways, different stories I guess. So of those 58 people we've talked to, there's so many different routes to it. And I find that if you knew about your kind of genetic predisposition first, then maybe you identify with survivor more, whereas if it's the other way around, maybe not. So. But there was one story that came to mind when I read this question, which was. Within our interviews, I interviewed two, sisters. Separate interviews. but one's journey involved kind of being diagnosed with breast cancer, and then having genetic testing and finding out that she had BRCA and that then resulted in her sister getting genetic testing because she was like, oh, well, if you have it, maybe I have it. So I'll get tested. And she was also positive. So in those interviews, they were both kind of reflecting on being a survivor, being a survivor and the survivor sister. So the sister who had had cancer and then got tested was kind of reflecting on how well, I'm not I'm not a survivor, but my sister is, and she was reflecting on how difficult she thought it would be to be a survivor and that she, like, doesn't envy providers. It was just really interesting that she said, like, I wouldn't want to make that choice. Like, that's so stressful. But she felt like, if you've already got cancer, this decision has kind of taken out your hands a little bit more. Whereas if you're a survivor, the decisions in your hands. and I thought it was a really interesting kind of insight to the difference maybe. 

Sara

Yeah. I love that example. Okay. Well let's switch gears a little bit to the role of social media. Affordances and affordances isn't a common term here. In other words, how did the tools of each platform influence the way provider share their stories? 

Dr. Vicari

All right, so we spent basically a whole year looking at what people were saying about BRCA and Lynch Syndrome on public Facebook. So we only focused on public spaces. So Facebook, Twitter x, TikTok and Instagram. So for 12 months we could we looked at this content, and the idea was to try and see whether we could see differences, whether we could, really make, discuss about what was happening on these different spaces. So if these different features and functions of the platforms were in a way influencing what people were saying about these conditions or what people were doing, I guess things are complicated because we're talking about function of different platforms. We also need to take into account that there might be different populations as well on these different platforms. And this came up as an important element. For instance, we focus on the use of hashtags. That's probably the easiest example to think about. So we basically collected all the hashtags in this content that we analyzed on these different platforms. And then we kind of mapped the hashtags and we looked at them and trying to understand and make sense of what kind of themes and topics that we're tagging to make sense of the topics. And it became very clear that what was Twitter we're talking about 2022? So the first part of our analysis is all Twitter. And then the last two months is the transition to X. So most of it was still Twitter. And that was the space for mainly hashtags by scientists clinicians. so a lot of academic self-promotion or networking and professional networking to search for clinicians and scientists at conferences or in a hashtag chats to talk about the development, research and, science around hereditary cancer Syndrome. So that was that kind of space and that type of probably population. So you would find the patient advocates advocate still there, but usually it would be the professional advocate or the very expert patient. While if we look at the hashtags from Instagram, that was a totally different word. So a lot of campaigning, especially in relation to BRCA, it would be a lot of breast cancer kind of awareness campaigning, kind of the kind of traditional breast cancer campaigning was kind of very much dominating the space there. There was a little bit of pink ribbon campaigning if you want to. So a lot of influencers work in associations with advocacy organizations. So kind of those actors and that type of content. And TikTok was a bit of a surprise for us because just looking at hashtag, you could see that you had a lot of kind of different, kind of more non-normative. We defined it. So a lot of hashtags kind of tagging also community that you wouldn't necessarily see easily in other spaces. So for instance, a hashtag that came up is very relevant was the flashy hashtag, which is a hashtag used by, community people, individuals who undergo a mastectomy, whether for prevention or a mastectomy to treat cancer. And then they decide not to have reconstructions, but breast reconstruction, which is something that you don't easily. We are talking about conditions that already are not really spoken of in the public domain, but here we are talking about people who make certain choices that are not usually seen very easily around. And nobody really talks about doing a mastectomy and not having a breast reconstruction. And this was coming up a lot on TikTok. So we kind of saw that there was a different space there. Possibly different people were anyway content. 

Sara

You just laid out some very concrete examples, right? With Twitter and X is where I find a lot of experts and doctors and scientists, you know, that's where I found more of that content. Instagram, like you said, it's very visual, supportive. A lot of the advocacy stuff. And then TikTok, I think just naturally TikTok is in your face, you know, a little bit more bold, I think. And people have a little bit more courage in that platform because you're right, you're going to find more of that community. so I guess that ties into the question of certain platforms being maybe more supportive or people finding a community within a given platform. Was one more effective than the other? I guess if people are listening to this and maybe want to learn, or they're newly diagnosed and wanting to find a good, safe space, that's a public platform we already know we have, like support groups that are private. and maybe there's a time in the space we can talk about that too. But for the purposes of this study, what did you glean from that? 

Dr. Ditchfield

Well, I think it's important to spend some time and see what's happening on these different spaces, and then you will recognize that there are different kind of demographics as well, in different type of communities, in these different spaces. And we recently went, for instance, to the LynchSyndrome UK annual conference for patients. So Lynch Syndrome UK is the leading organization advocating for Lynch Syndrome in the UK. And they always have an annual conference where they bring together patients careers but also clinician scientists and different stakeholders. And we presented our work about social media. And one of the points that we wanted to make was that TikTok may sound like a kind of a strange place, especially for, people with this condition that are usually in an age court that is different from the TikTok population demographics, because usually when you learn about having a genetic condition, one of these conditions just slightly older than eight, that age group. Right? Usually. but we were saying it's important to know what's going on on TikTok because. These conditions are a family thing, so there will be kids of a career, so they will end up on TikTok. And if they heard of this condition in the family, they will go there and and be exposed to that. So it's important to know what type of content about these conditions is available in these different spaces, because again, these Syndromes are a family thing as the different age groups in the family. 

Sara

So I never thought of it in that case. 

Dr. Ditchfield

Yeah. Your 16 year old isn't going to go to the the Facebook support group. Like probably not all 16 year olds I know like a Facebook is for old people. Like that's not where they're going. So. Right. Yeah. Yeah there's there's research isn't there, that says like TikTok is like a search engine. Oh yeah. For young people. Yes. Like they don't Google it. They'll TikTok it. 

Sara

Yeah, that's really interesting. So I haven't shared the podcast on TikTok Tok, and some of it probably is the generational imperative because I'm a little bit older and my, you know, my peers who are finding out their diagnoses are probably going to be older. But you bring up a good point in that we do need to start educating people earlier. They could start asking family members questions, especially if they have multiple family members with cancer, or they had a family member who had cancer at a young age. These are some red flags that maybe people who are following, you know, influencers or advocates or whatever in this space on TikTok might maybe bring some awareness to their own family members. So. Interesting point. 

Dr. Vicari

Yeah. We end up opening a TikTok account, to, you know, share information about our project. And, yes, I mean, we were a little bit resistant to the idea because, again, it was not really our age group and we had to familiarize ourselves with it. And it was funny that way. 

Dr. Ditchfield

Yeah. And I did it mostly not very well. I have to say, I think it's because, I don’t know, you have, I feel like you have to be quite visible on TikTok. Like your face, your voice, your your body, I don't know, I feel like it's because it's so visual and Instagram is really visual, but I feel like Instagram you can use like Canva to make like pretty informative kind of things. Whereas on TikTok that doesn't quite work as well. Like, you need to be there and sometimes like people don't want that. That's just not how they want to show up on social media. So that's what I found personally hard about TikTok. 

Sara

Yes, that's how I see it too. And I think that's probably been a bit of that anxiety going on the TikTok. 

Okay, well, let's go back to a bit around some of the behaviors that you guys saw in your research about why people are sharing. So we just talked about some of the platforms and some of the tools within the platforms. But why do some people share and why others stay silent? 

Dr. Ditchfield

Yeah, sure. So I kind of got an answer that's more like talking to motivations, fears, stigma, that kind of thing. So is it okay to draw on that? Yeah. so. There's a lot of kind of research out there on kind of why people use social media to talk about health and illness, but I think some of the main themes are to find support from others, for sure, going through similar things. so like online technologies transcend geographic boundaries. So if you don't know someone you know on your street that has Lynch Syndrome or BRCA, you'll probably find someone online who does. So that's the kind of main draw motivation that takes people there in the first place. but other motivations include things like just learning, educating yourself, raising awareness, but also kind of therapeutic reasons as well. And just kind of sharing your story as like a form of diary taking or as a reflective tool comes up quite a bit as well and has in the conversations we've had in our research in terms of kind of some of the fears around sharing stories on social media, which I guess links to this question of why does some people not share? 

One potential kind of fear that people have is negative backlash, from other people who use social media. So from your from your audiences. So this has come up a little bit in our research as well. So kind of comment. So if even if people are posting about their story or their experience getting comments that are kind of misguided or misinformed and then kind of having to explain yourself again, is exhausting, tiring, but also kind of that's like the more gentle side of it. Like we've had examples, unfortunately, of some of our participants who are like, trolled and just kind of like abusive content thrown their way because of their sharing their stories or their their bodies. and showing up how they show up. 

So in a recent article of, of ours, we kind of looked at we looked at TikTok and the kind of identities that people performed on TikTok. And one of those identity types that came up quite a lot. Was something we labeled as the defender, and it's pretty self-explanatory, but kind of the identity work that someone was doing in their TikTok post was basically defending, their condition, their preventative decision, or their community more broadly, the BRCA community or the community. 

Like we said earlier, the community is quite visible on TikTok so it was kind of like, yeah, this defending role exists, I think, which was quite surprising to me when we first started this research, because I just I would never have expected in like the health and illness kind of space online for this kind of backlash to exist or this kind of need to defend full stop, really. But it's it's certainly there. And unfortunately, this kind of does link to stigma in the way, because it seems like most of this backlash happens in relation to bodies and in relation to women's bodies. So a lot of the kind of examples that we have in our data are, are women who are flats or women who have ostomy bags and they're, they don't look like what a woman should. I'm doing air quotes look like. So it does link to kind of broader societal stigma as well. And then platforms can kind of feed into this themselves as well. So through things like moderation, platforms can kind of remove certain content or reduce the visibility of certain content. So they don't take it down, but they don't promote it through their algorithms. so kind of in our research, women who posted about kind of their mastectomy journey, for example, if you have BRCA, that's often a common preventative decision that someone would make. And often people want to represent that visually. But this can be really challenging on social media. So sometimes kind of our participants had a fear not of backlash of other social media users, but fear of the platform themselves almost removing that content. And it's almost not the end of the world if they take the post down. It is frustrating and it is upsetting, but I think the bigger fear was I don't want to take my account down because I've built a community here and I, I don't want to kind of risk losing my account. And there are stories where I can't so completely removed, and then you have to fight to get it back. And even the language that some of our participants have used has been like fighting with the platforms to kind of keep your content up there. So I don't know how this all links back to the question. I think it's kind of what are the things that stood out for me were like the fears and the stigma, that might drive you to share or not share. I guess I'm talking about people who are already sharing, but some of the challenges that they themselves face. Yeah. And when they do share, and ultimately some of these things put people off. Saying certain things or whatever because they're like, well, I can't be doing with getting kind of abusive content back. So I won't put that picture out there or I won't say that, or I can't risk losing my account. So I won't say this and I won't say that. So in a way, it kind of silences the conversation. 

Sara

It does, but it is disheartening. Whether it's about genetic predisposition to cancer or other health and wellness, things. Like you said, you were a bit surprised too, in finding some of these situations where people were were that stigma associated with women's bodies. And and I guess the question, which isn't necessarily one we had discussed earlier, but really what that says about society in general and in terms of how we're interacting with social media. 

Dr. Ditchfield

Yeah, it's a much it connects a much broader issue beyond hereditary cancer here. And kind of I don't know if it's the same in the US, but in the UK there's a lot of talk on the problem of online misogyny in general and like the man sphere and things like that. So I think it's wrapped up in that as well. But you see it in the hereditary cancer space. 

Dr. Vicari

Yeah. So it becomes extremely evident when we are talking about platforms that are visual. So whenever you share an image of your body, and your body looks different from what is expected, and especially for a woman, and you have done something so like you've had the surgery and you have made a decision to keep your body even looking a bit different from what you normally look like, then that's where you might receive backlash. And so we have seen with some of the participants who when we have interviewed, we've seen all the label, all producing all this content anyway to raise awareness, but also of knowing how to do it and to what extent you want it to get out of your community, knowing that there will be some kind of response from the wider social media user base. 

So there is this is constant work of knowing how far to go and what kind of response there will be, depending on how far you go. And so there's a lot of knowledge and literacy about platforms, the algorithms, the so-called so-called folk stories about how algorithms work in terms of being view visibility. And some of these creators. So some of those who spend a lot of time creating content, will be extremely knowledgeable about, what to do or not do based on bad experience. 

Dr. Ditchfield

Yeah. And it feels like there's, like, there can be a tension because a lot of people's motivation behind sharing is to raise awareness. kind of introduce, if that's the right word. Hereditary cancer to people who don't know about it. But there's a massive risk that comes with that in that exposing yourself to a community that might not kind of be understanding towards it. So I think it's like people want to cross that boundary, but then they're scared to because of potential backlash. 

I kind of spoke about some of the challenges that people who already post, face, but I didn't really address the bit of the question that was like, why some people don't want to go public full stop. So some reasons why people would want to share their story publicly is that they want to be there for other people, going through the same thing as them. So kind of like a quote that always sticks in my mind as like, I want to be the person that I never had. So they're like imagining what would I want to have seen or heard when I was first diagnosed. And I want to  put that out there visibly for who, whoever might read it. And people often say, if it helps one person, then it's worth being public. And so that's like a big kind of motivation that sometimes other motivations are around, like representing certain populations or demographics. So if people feel like there's a bit of an absence of younger women, then that f makes it super important for them to kind of represent younger women. 

The same for like if you're a black, black or brown woman. I mean, as Stefania was kind of explaining in answer to another question, was that I don't know whether you did or not, I actually can't remember. But in the first part of our project, we kind of found that, representation of BRCA was very white. Yeah. so the visible content that you see, if you search hashtag BRCA, you're faced with a lot of white women, black and brown women aren't really visible. So, for our participants, it came up a little bit like I wanted to start creating content because I couldn't see anyone like me doing it, so I wanted to do it. So this is a big motivation. I guess similar for the flattie women is kind of representing the invisible almost. 

Why do people not want to share? Sometimes it's a confidence personality thing. Like, I don't know, kind of like, I just they've never really shared on social media that much. So you don't have the confidence to speak or be public about it. or sometimes like knowledge of platforms just not being taken off but other things that I think are really important are some people have said like by disclosing that I have Lynch or I have BRCA. I'm kind of disclosing that my family does. So it's not just me that I have to think about and consider. So if I go public, I'm kind of automatically making that choice on behalf of others. So that's like, I don't know, sometimes that's the reason people don't want to. and then you have like the concerns of kind of data worries or they're kind of data falling into the wrong hands or being used for the wrong reasons.

Like getting in the hands of insurance companies, which is more of a concern in the US than it is in the UK, or something that we call context collapse. So, when you use social media often, like different parts of your life, all end up in the one space. And maybe apart from your wedding, that never happens in offline life, but online you have all these people in one space, and sometimes you don't want to share something personal with your colleagues from work, even though you want to share it with your best friends. So it's like if you're talking about your mastectomy and you want to, you know, show pictures of your scars or whatever, you might not want your boss to see that. So that kind of prevents that public sharing. 

Dr. Vicari

Yeah, I know, I think it links back to the idea that, okay, these conditions are experienced in different ways by different people. So we shouldn't assume that everybody has to do the same thing, because at the end of the day, I think it's about personal choice. 

Sara

Yeah, absolutely. So maybe this is a good time to talk about misinformation., right. We have people who are willing to share their stories, and if they're using facts or they're using their personal stories, whatever it may be. One element, though, that maybe those of us that are on the receiving end of watching the people go through those experiences is maybe misinformation or how information is shared. And then maybe you can help our audience distinguish between personal storytelling and harmful advice. 

Dr. Ditchfield

Unfortunately, there is a lot of misinformation out there in the health and wellness space on social media, but there's also a lot of amazing content in there, too. I don't know if this is more like what I personally think, rather than my official advice, if you like, but maybe approaching this kind of space as like most of the content is a personal story. So like you do at the beginning of your podcast episodes, kind of disclosing like, I'm not a medical professional and. These are just kind of my personal encounters, like. I think if you use social media, going in with that attitude that most people sharing and talking about this are coming from that perspective, and it's not like a substitute for medical advice. I feel like that would help but also potentially arming yourself with knowledge before going into social media. So if you use trusted organizations like here in the UK, we've got Lynch Syndrome UK, there's fourth. you mentioned another one quite a lot in America, Alive and Kick’n. If you kind of use them as your kind of basis to gain knowledge and you have that and then you go into social media, I think it'd be easier to spot the harmful stuff than because you kind of know the right stuff, because, I mean, there's all loads of debates around like authenticity online and like performing authenticity. I mean, we're all performing authenticity to some level when we're online. we all make choices around what we put there, what we don't put there, how we put it. But. You can, I don't know, you can. The scary thing is you can make an account look pretty official, even if you've got zero qualifications. So you do kind of have need to be cautious. But I think arming yourself with the knowledge from the right places and then going into social media, so you've kind of got that skill to read. The content is maybe helpful. 

Dr. Vicari

Yeah. Because at the end of the day, I mean, personal storytelling has become a means for advocacy and has been one of the core elements for advocacy for a long time, quite a long time now, even the World Health Organization is relying is trying to find influencers or content creators to help them contain misinformation and disinformation. so there is an understanding of the importance of personal stories as part of educating, informing, advocating for conditions. 

But yeah, based on our experience of speaking to many people now and to organizations, it looks like once you identify, a strong organization, that is where patients are part of it, often collaborating with clinicians or physicists or scientists. They can be a kind of gateway. So through that kind of official channel, you will definitely be able to identify then other kind of accounts that are connected or somehow come out of the organizations, and develop advocacy, but still be some sort of connections with that organization. yeah, it's sort of gateway. From there, you start navigating different accounts and personal stories that are possibly much more credentialed than others, and you kind of build your literacy, I think also.

Sara

That’s been huge for me. I think with mentioning, you know, we've mentioned force multiple times, and not just because I'm an advocate, but I feel like they do a great job of helping those of us in the hereditary cancer community find those resources, whether it be through pointing you in their XRay, which is their online resource, or finding credible information, but then connecting us with folks like you who are doing research studies anywhere in the world, which is pretty amazing. and I think two, because I want it to be connected or associated with credible organizations, you know, if I'm researching or speaking to a topic, my podcast, I will try to find a study to support it because it is important to me. I'm glad you mentioned that specifically. 

So how how can we as advocates or you guys as researchers, what what can we do? I mean, you talked about elements related to the social elements. We talked about the stigma. We talked about misinformation. We've got a lot going on in this space, but there are a lot of challenges. So what can we do to help improve that environment? 

Dr. Ditchfield

I think he touched on a few things that kind of advocates and content creators can do themselves in terms of like being committed to sharing credible information. And a lot of people, a lot of a few of the participants that we spoke to would specifically run their content past Bowel Cancer UK or, another kind of organization like, is this okay? and that sort of thing. So that's really good. 

But also really interestingly, we came away, came across some stories of kind of people within hereditary cancer communities kind of actively working to improve the digital space that they were in through, like moderating it themselves or like, yeah, kind of monitoring what content was posted. So one example of this is like a closed Facebook group. so there's often layers of moderation in those groups themselves through the admin who kind of can approve or disapprove or anything. But we found that, like the everyday user was also kind of doing this work within these spaces. So kind of one of our participants would correct incorrect content. 

So if someone posted something they'd then comment on it and kind of say, oh well actually “blah blah blah blah. See this link instead as like an alternative”. I don't know, she'd kind of interact with it and work to. Yeah, I guess correct any misinformation that she thought she was seeing. And she said something like. she described it as “weeding the garden". 

Sara

Oh, I love it. 

Dr. Ditchfield

Which we just clung on to. We were just like, that's such a lovely, like quote. 

Sara

how is that different than the defender? 

Dr. Ditchfield

Yeah, that's a good question. I feel like if the defender feels more personal. Yeah. Weeding the garden is more like a job. Like I don't know like a job. You're not personally involved. You're just saying that's not a good piece of research. Try this one. It's not like you're defending your own choice decision body. I think that's maybe where the line is different. 

So I guess that's one thing that advocates or users of social media can do is kind of “Weed their garden”. But one thing I did want to say in response to this question is that I just I don't think it should just be the responsibility of advocates and of users, of social media and of researchers like. 

It's a platform problem as well that you can't put this on the shoulders of advocates like yourself, who are kind of doing all of this work, mostly in their spare time. It's not their job to fix these massive problems of social media in terms of kind of abusive content moderating, overly moderating all of these things are not the problem of cancer advocates. They are the problem of social media platforms. So yeah, there are things that advocates can do and users can do, but it shouldn't stop with them. but this is really challenging because platforms are massive, massive corporations, and the way they work is often completely black box. No one really knows what happens or what goes on. 

So maybe this is a space for the researchers to maybe step up and try and find ways into platforms to kind of advocate for policy change on the platform front, rather than the condition side. 

Sara

Yeah. How feasible is that? 

Dr. Vicari

What we try to do is to put the word out. So we do try to make to put some pressure. And some of us are part of advisory boards and trying to, you know, show that some bad things are also happening. For instance, there is moderation, but it's not moderating the right stuff. So the abusive backlash that some of these advocates receive is not being motivated, but maybe they're exposing a bit of their body is being moderated. So, by producing evidence that this is happening, we are trying to make a little bit of a difference by, you know, trying to push this evidence towards this company. But of course, we're we're talking about massive giants. They work for profit. So it's not easy. But, these are the ways that we can try to put forward to try and make a difference. 

Back to the original question., how do we try to contain misinformation and disinformation. I think for advocates or for people carriers who want to speak about these conditions. And we have seen this work of, you know, bottom up moderation. So the witch in the garden kind of thing. But I think it works also well by talking to the different stakeholders. So scientists, advocacy actors, so not being isolated. That helps. As you said, you know, sometimes you might be sharing the content with force just to make sure that. This makes sense for now to the sauce that you're sharing. Or and that's the thing the thing moving with other stakeholders as much as possible, networking with others that are experts on their side of things. 

Because I do endorse the idea that patients are experts and carriers are experts because they live these conditions, these these knowledge and awareness on their body and in their mind, and they are expert on that side of things within the experts. And I think this expertise needs to be combined and connected. That's that's also an awareness that we see with many of the participants. many of them say, you know, I know what I know, and I know what I don't know. So I do need the scientist. I do need a physician to work with. 

Sara

Okay. Now let's let's switch to the research impact and the future use our advice for providers and health professionals talking through what you hope to accomplish with this research. What is what is going to come out of this research going forward? 

Dr. Vicari

Okay. So our next step is going to be towards the end of the project. So in a few months we want to organize a kind of workshop, an event where we try, we want to bring together all the participants who were part of our study, probably in a hybrid event, because we have participants from different rounds of the world. And so we want to try and help connect even more if possible and share experiences. Also because we spoke with people who are in different contexts with very different health systems, and that also made a difference in the way they experience their diagnosis or their living with the condition. so we're going to try and kind of build these, these events just to bring people together and give an opportunity for different careers to have a chat, maybe, and network even more than they already to potentially and also bring in a couple of advocacy organizations and clinicians. So we want to open up another space for people to talk about this and see together what can be done to raise awareness about these conditions. and that's the first step. And then we want to try and build a report about what we have seen on social media and the role of social media, and trying to push the report towards these companies. it won't be easy, but we want to try and see whether we can show evidence of what works and what doesn't work. 

On the other side, we also want to share these results with the organizations we've been in touch with. So we have worked quite a bit with Lynch Syndrome UK in the UK. So we want to try and and write a report about how social media can help for what they do. They are already quite a lot on social media, but maybe kind of toolkit or guidelines on how it could be used and how it can be shared also to individuals who are connected with your. Organization and want to do more advocacy via social media channels to try and give a toolkit on how they could try and build their work on social media for advocacy. And then, based on what we have done so far, we would like to then build our next step. next research, project possibly related to what we have done so far. 

Sara

Okay. So, okay, a million things just went through my mind. Like, I love the concept of providing some kind of toolkit, if you will, that says for people who are in this space, on these platforms and these resources within those platforms, here are some effective things that you found during your research. as somebody who is in this space and using social media to promote awareness of hereditary cancer, I'm definitely curious to see what comes next out of this. What are things that are effective and maybe things that aren't so much? I am fascinated, too, with the things that you did find that were a little bit concerning. you know that throughout this whole process that maybe collectively we can overcome some of that. It hadn't occurred to me. You know, we do advocacy when we think of our organizations that we support like force, but we can also advocate for better on social media for our community. So what is the vision to see how this information is going to be shared? 

Dr. Vicari

Yeah. So it's not easy. We're building towards it so they'll have a definite answer. We have still a few months to go before the end of the project, but definitely it's part of the University of Sheffield cancer strategy. We want to for our institution, of course, to give a voice to the project and to help us disseminate our findings as much as possible. And that is definitely going to be one of the venues that we're going to use to disseminate it as part of the project. We also have established connections with genetic counselors. So we have had a consultancy with a genetic counselor, Julian Barwell was part as contributed his thinking and work with us in the course of the project. So we are also going to work with them to connect with genetic counselors in the UK and try and see how we can disseminate information about the role of social media in the way in which people learn about these conditions. Because very often, also in our conversation, in interviews where people - When it comes to an understanding of the role of social media, the clinicians or the genetic counselors tend to be very resistant to the idea that people should go online. 

Sara

I can see that,.

Dr. Vicari

but actually people do go online because there's no information elsewhere. Especially at the beginning, there's not that easy to find anything about it when your condition is rare. That's what I started from. Or it's not that rare, but people don't know about it because nobody talk about it. Talks about it. You go online. So I think we also want to push that type of understanding towards the medical community, that social media is not just for them to not work about the research and obviously building network to do more research is also very much something extremely important for patients and carriers. So it's important to for them to know about it and potentially advise on where to go and how to deal with that. And, you know, in those encounters with patients. So these are some of the venues that we have in mind at the moment. 

Sara

Yeah, that's really helpful because, you know, as somebody who received, you know, like a front and back, you know, here's your genetic predisposition, here's the high level information. Not that I felt, you know, on an island after I got done with that call. I, she provided me with some resources. But you do feel a little. But then you go home. Now what? Yeah. And so I can see that there is there has to be a way to help people feel a little bit more prepared. 

So now, Hannah, maybe you can speak to this. How Previvors can use social media thoughtfully.

Dr. Ditchfield

Yeah. I think this links back to a few things that we've already kind of maybe touched upon in other answers, like. Knowing that social media can be a great source of support and, and information. But I guess keeping in mind is like not a replacement of like actual medical care and using so like pairing your use of social media with the knowledge and information from trusted organizations so that you can create a social media landscape that you trust. 

That's because I think that's the thing that's interesting about social media is you can kind of curate your feed to some extent, like not to a total extent, but by following certain accounts, by engaging with certain content, you can teach your social media what you want. It's not foolproof, but you have a bit of a say in what the algorithm delivers back to you. So that was one note that I had on here that I think there's this term like curate your own feed kind of thing. So kind of follow and engage with accounts that you trust. and hopefully that will kind of feedback some similar content to get you into kind of the right space, the right conversation that's going on online. And use it for inspiration to then go to your medical provider and say, oh well, I've seen this and then ask those questions. 

Sara

Okay, so I had one more here Stefania wanted to speak to was where someone should start. If they feel alone, they don't know what to share, whether they should share in your research, what what insights can you glean for us? 

Dr. Vicari

It's based on our journey in the project and the people we spoke to. being being advocates or just somebody posting a little bit about it but not identifying themselves as creators. And it's going back to the role of patient groups that are already out there. So for us, Lynch Syndrome UK was definitely an element that was connecting. Most of the people we interviewed in the UK related to Lynch Syndrome. And they also use social media and have online groups and private groups that are definitely an important starting point for many people. So, this has come up in the interviews, but also in conversation with some of the organization trustees. People who are diagnosed have had, for instance, genetic testing in the morning, in the afternoon. They find that the online group, the private group, and they may be posting anonymously because it means several line groups. When they're private, you can do it. And they ask the question. So I got the results today. So please tell me something about it. What should I do? And, as research, as a researcher, I'm part of the group. And I see these questions all every day. and you definitely see that. That's a good point to start, because you will definitely get answers from people who have been there and, are very, very keen on, you know, answering straight away. So, for instance, the moderators of this group I have in mind are part of the organization, and they would, definitely one of them will definitely answer to your first question and will direct you to the list of resources that they have linked to the group that is there. And so they will point you at basic information to start with, and they will be able to connect you to others, maybe in the same situation as you are. Maybe you have a specific question or specific. Situation in mind and they will be able to connect. 

And I think that's what really interests me, is that the role of advocates and the role of people who spend so much time as much of their, strength energies in helping the others to these connections, the system. It is so important for that. And that's the positive side of things. So I like looking at the positives as much as possible because they have enabled people to connect. 

Sara

To get back to the future of this project. You talked about getting the group together. You have a couple of things you need to do in terms of communicating it out. What's next for you all? 

Dr. Ditchfield

I was really, I guess during this project, I was really struck by a kind of stories of moderation, and the stories of like the, the backlash that happens sometimes. So that kind of like led to a lot of curiosity in relation to women's health conditions online more broadly. So broader than hereditary cancer, but kind of stemming from the BRCA kind of conversations that I'd had. 

So I'm therefore thinking, well, I'm currently developing a project to investigate experiences of social media moderation in this broader context of women's health. So looking at a few different topics. So maybe menstrual health, menopause, birth, gynecological cancers, how do people experience these kind of moderation practices across these different areas? So I feel like it's especially important to look at in the context where Meta, who own Facebook and Instagram, are changing their moderation policies this year to do technically less moderation and less censorship. But that comes with the fear of their them being increased backlash and like toxic kind of behavior and communication online. So I feel like it's a good moment to ask those questions. So that's what I'd like to do building on this work. 

Sara

Now, if people wanted to learn more about your project or how they can get involved with future research opportunities, how would they go about doing that? 

Dr. Vicari

So we do have a website, a project website, and we have social media accounts. So we have our famous TikTok account. And like we mentioned earlier, we also have the Instagram. And we used to have a Twitter account. Now it's still on expert. We kind of step back from acts a little bit, because we find it to be a less welcoming space than it used to be when we started, but our account is still there so that we we share all the information about the project and updates about our findings there. And our publications and presentations are also there. So anybody can read what we do and it's open access. the same thing at all across each platform. So we can share the handles with you? 

Sara

We'll put the handles in the show notes. 

Dr. Vicari

And in terms of building on what we are doing at the moment, I'm, I really want to keep on focusing on, hereditary cancer. And similarly to Hannah, I want to focus on women's health. so the idea that I have at the moment is to focus, especially on the risk of gynecological cancers across BRCA and and Lynch Syndrome, especially on the way in which women or anybody, anybody with a female reproductive system is being offered care to cope with knowing that they have an increased risk of having these type of cancers. 

My sense is that in the UK, but I think more broadly, there is an idea that the communication and the care that is provided is shaped, especially in relation to family planning. So the word out there is that if you have one of these genetic mutations and you have a female reproductive system, well, the best way to do is do your family planning and then go for a preventative surgery. So and that's it. And I think this is not really inclusive or comprehensive of what the woman or somebody with a female reproductive system may want out of their life. And the idea that the only thing that you can do is to do that and get major surgery that is obviously very invasive and will have implications for the rest of your life, not just because you won't be able to have kids, but also because there are other things related to having ovaries and an endometrium. So I would like to speak to people who have taken different choices, made different choices in relation to preventive or preventing cancer, gynecological cancers, or thinking about what to do or not to do in relation to having this increased risk. 

And I would also going back to social media, I would also like to see what people say online. So if there is a cultural influence on doing it or not doing it, because as women, it seems to me that we always kind of suggested what we should be doing in terms of our body, and I find it a bit controversial. So I really think we should be spending a bit more time thinking about women's health in a different way. So that's my next step, and I'm very passionate about it as you can feel it.

Sara

I love it. I know, it's great. It really ties into our community, the hereditary cancer community, because those of us that have gone through hysterectomies, have had our ovaries removed. There's this bigger picture that is not communicated, I think, and there's definitely an opportunity in your research, both of your research in women's health in general, and I'm excited to see what you guys have coming up. 

Dr. Vicari

Thank you. 

That conversation with Doctor Vicari and Doctor Richfield was such a meaningful one. Meeting in London and connecting face to face made this experience especially powerful, and it's clear their work will continue to shape how we think about living with genetic risk in today's digital world. And I think their insights remind us that sharing our stories online isn't just about raising awareness. It's also about building connection and community in moments like this really underscore why research, dialogue, and lived experience all matter so much. For anyone listening who has ever questioned whether your story matters. Let this be a reminder. It does. You are not alone, and your voice is part of a much larger conversation that researchers, advocates, and communities are working hard to keep moving forward. If you'd like to learn more about Dr. Vicari and Dr. Deitch project, the link will be in the show notes. You'll also find resources from Force Alive and Kick in Lynch Syndrome UK and other organizations that are dedicated to supporting providers and families navigating hereditary cancer risk. Thank you again for joining us on the positive Gene podcast from London. And now back in the Nashville studio.

Resources & Links Mentioned

• University of Sheffield Cancer Research – Previvorship in the Platform Society: https://sites.google.com/sheffield.ac.uk/previvorship

• Instagram: https://www.instagram.com/previvorship_research/

• Sage Journal: https://journals.sagepub.com/doi/10.1177/20563051251340862

• FORCE: Facing Our Risk of Cancer Empowered – https://www.facingourrisk.org

• Lynch Syndrome UK – https://lynch-syndrome-uk.org

• Alive and Kick’n – https://aliveandkickn.org

• FORCE XRAY – https://www.facingourrisk.org/XRAY

  
  

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