Voices Uncovered: Understanding Mental Health in Rare Diseases using Social Listening

Speaker A: Welcome to let's Talk Rare, a monthly podcast from Partners for Access, where we discuss news, views and the latest insights from the orphan, drug and cell and gene therapy world. Welcome to let's Talk Rare. I'm Owen Bryant and as ever, joined by my co host, Georgie Rapp. Hi, Georgie.

Speaker B: Hi, Owen. Pleasure to be here.

Speaker A: Great. Great to have you with us. We're joined by two esteemed guests. Lauren Roberts joins us from Rare Minds. Welcome, Lauren.

Speaker C: Hi.

Speaker A: And, um, Darren Callanan from Partners for Access. Hi, Darren.

Speaker D: Hello, everyone.

Speaker A: So today we're going to be talking about mental health challenges in rare conditions. Patients and caregivers dealing with rare conditions experience unique mental health struggles, but these often go unseen in traditional research. Today we're diving into what we can learn from listening to their real conversations online. And as such, we've got Lauren Roberts from Rare Minds to discuss this with us. Lauren, tell us a bit about yourself and a little bit about Rare Minds.

Speaker C: Hi. So I'm the chief exec of Rare Minds. We're a UK charity. We're quite a new charity. We were established in 2020 by our founder, Kim Winter. So Kim has over 30 years experience as a psychotherapist, but also, uh, family personal lived experience of air conditions and she spent quite a long time during her journey thinking, where's the mental health support? Uh, and eventually, sort of in the height of the pandemic, did what most people do in the rare disease community. I thought, I'm just going to have to do it myself. Um, so she got going. I was actually working in my previous role at Genetic Appliance UK when we first met. And then after a couple of years I just thought, you know, this is, this is where the future is at for rare disease care. So, jumped ship. And I've been at Rare Minds for a couple of years now, initially as head of development and I took over as chief exec in May.

Speaker A: Wow. Congratulations. Cheek. Exact. How's that going?

Speaker C: Yeah, busy.

Speaker A: Good answer, Good answer. Now, Lauren, what we love to do with our guests is just ask them some either OR questions just to help us and our listeners get to know you a little bit more. So I'm, um, going to give you two options. Just tell me which one resonates with you more. Town or countryside?

Speaker C: Town.

Speaker A: Tea or coffee?

Speaker C: Tea.

Speaker A: Writing or typing?

Speaker C: Writing. Depends on the context.

Speaker A: Working from home or from the office?

Speaker C: I would love to have an office, but I'm stuck at home. I moan about it every day.

Speaker A: Logic or emotion?

Speaker C: Logic.

Speaker A: Big laugh or a quiet chuckle?

Speaker C: Uh, big laugh.

Speaker A: Fact or fiction. Fact, Structure or spontaneity?

Speaker C: Probably structure.

Speaker A: Trains or planes.

Speaker C: Trains.

Speaker A: And finally going away or coming home?

Speaker C: Um, going away.

Speaker A: Okay, thank you very much. I'll give you a little bit of a snapshot into Lauren, by the way. Lauren, I love your name. I've always loved the name Lauren. It's always been one of my favourite names because of the way it looks, was the way it sounds. And every Lauren I meet is lovely. So we'll find out. Because we'll find out.

Speaker C: No pressure.

Speaker A: So we're here to talk about, um, a partnership between Parts for Access and rareminds in a project. So tell us a little bit about how this partnership came about, Lauren.

Speaker C: So this is something we'd, uh, actually social listening research we've been interested in for a while. One of. So Rare Minds is sort of fundamentally a, uh, service provider. So we provide managed counseling services for other charities and rare communities. But part of our mission is around helping to kind of fill the research gap when it comes to mental health and rare conditions. And some of that's trying to do it ourselves. But also it's kind of throwing over to other people and saying, look, what are you doing? Where you could be building this into what you're already doing, or what information do you have that you could be helping to fill this gap? And there was a report that came out in America that used social listening to look at mental health and rare conditions. So it had been on Kim and mine's horizon for a while, but we didn't really know how to take it forward. And we'd had some conversations and we weren't really getting anywhere. And then I was at the World Orphan Drug Congress and I saw your sign, basically, that said about social listening. So I went and had a chat with the guy on the stand who gave me Darren's number. And then the rest is history, really. I guess I sort of made a plea to Darren and said, we know there's a real need for this. We really want to scope out this technology, see if it would work. See, you know, what would be the potential benefits of it, what would be the risks of it? And Darren said yes. So it was really a kind of meeting of minds where we had the need and you guys had the tech and Darren, and we're very grateful. Yeah.

Speaker A: And Darren, I guess, over to you. Then you got a call from Lauren and from our side. How did this all play out?

Speaker D: Yeah, I was so delighted to hear from Lauren because, um. Well, first and foremost, when she explained that background that she's just explained now I knew that you know uh, patients with recognitions and um, straight away I knew we were going to be able to help with social listening. Um, and that's on the back of lots uh, of other social listening projects that we've done in rare conditions where the focus hasn't been mental health, but mental health naturally bubbles up to the surface time and time again. So I knew straight away that when we were specifically looking for the mental health burden that we were going to be able to find a lot of data, a lot of good insight that was going to be able to be useful. Um, and I knew it was going to be insight that wasn't going to be available through other means as well. So um, people speak differently uh, in, through uh, when they're anonymous, in forums, when they're very specific communities of like minded people. Ah And I knew that was going to generate insight that was going to be very, very useful. So I was really delighted that Lauren made the call to us and uh, knew that straight away we were going to be able to help with that mission.

Speaker A: Yeah. So how did we start the project? How did it get off the ground? I mean we've had the conversation where did we go next?

Speaker C: I mean we were just astounded by how fast everything happened. I've sat on numerous sort of survey committees and things previously and everything takes a really long. So I think when we were first presented with the timeline we were a bit like oh, okay,

Speaker D: yeah, I think um, we have um, a team of people who are very eager to help internally at Partners for Access, Keenan Cam and Will Jones primarily who um, were not only as new analysts, really wanted to learn more about social listing but also about broader uh, rare condition challenges. So we're really keen to get up and running. Um, and then we just worked very collaboratively with Lauren and Kim on um, finding the uh, rare conditions that we wanted to focus on. So we wanted to get a broad spectrum of the mental health challenges across rare conditions. So we selected conditions that had uh, different age of onset, different treatment experiences. Some have treatment, some don't, different prognosis, different physical symptoms. So we're getting a real broad spectrum. So it was really helpful to work with rare minds to help define what those conditions might be that we would search for and also to help us work with them on uh, defining some of the search terms that we wanted to use to really capture the mental health burden. Uh, rare minds being the absolute experts in everything related to mental health and rare conditions and also being able to um, make that into really good Boolean search strings effectively to get the data out. So I was really collaborative, uh, from the beginning. It was very quick to get going. That was driven by some really eager analysts that we have that were. That were keen to get going. But, um, yeah, it was very collaborative from the very beginning.

Speaker C: I think what was really useful for us as well was that the conditions that were suggested to kind of get the broad spectrum, uh, most of them were actually conditions where we already run counseling services as well. And so we have partner charities working those areas. So it's kind of extended that collaboration as well. So we've now probably jumping ahead, but with the results, we've now been talking to them as well and looking at them and thinking about, is this useful? How could they be used? So I think this was. We didn't really know what we were going into with this. It was just a kind of what's there and how could it be used. And I think we're still really working that out. But it was really nice for us that collaboration could continue on to our charity partners as well, and not just with you guys, uh, much sort of broader benefit, I guess, for everybody.

Speaker B: So how has social listening changed how we review mental health needs within rare conditions? What kind of. What outputs, uh, where you're getting.

Speaker C: What was really interesting, I think one of the key bits was seeing that actually people are talking about their mental health sort of struggles as much, if not more as the kind of physical side of things and the diagnostic odyssey. So I think, uh, I used to work for a policy organization and very much the focus is always on that diagnostic odyssey and how can we get people to diagnosis, and all of that is absolutely vital. But I think one of the key things we've been saying at Rare Minds is that you can't forget about the mental health side of things. It needs to be an integral part of care. It needs to be as important as the focus on physical health. And I think for us, the findings in this report really sort of helped to. So that. That's not just us saying that it's out there. This is what people are talking about most, and that's what we are really struggling with. Um, so that was really, really useful for us. I think a lot of the themes that came out weren't necessarily surprising. They, you know, both from our clinical work or from other, you know, there's not very much research that's been done, but there is some. But I think what it did do was kind of reinforce that for us. And because it's coming from a different angle and a different methodology. It sort of adds a bit more validity as well, so you start to get more of a whole picture. So I think it's, it's really useful in that sense that we know clinically what we've seen, what we've seen in the surveys that have been and from this are all kind of reinforcing the same points. So we can feel pretty confident that we've got quite an accurate picture of what those challenges are.

Speaker B: Is there any examples that you're happy to share with us that really helped uncover an insight really quickly by using this method? Anything that really stood out for you through those results?

Speaker C: Yeah, this might actually be a bit of a tangent, but it's the one that I've been talking to people a lot about as well. I had no idea and I can speak for most of my other colleagues in the rare community that I've spoken to that Reddit was such a place that people were going to have conversations about their rare conditions. I think so much is focused, focused on the other platforms but you know, people might have Facebook groups or they have Instagram. Reddit had sort of just, I mean I've done sort of comms and engagement work for almost 20 years and I just never thought of going to Reddit and I've spoken to so many other charities recently and said, had you ever thought of Reddit? And they were like, oh no. So I. It's kind of a bit of an incidental one but actually it was, it was so eye opening for us that there's this whole platform that we've all just been sort of ignoring. And I think it's something that if we move forward doing more research that we definitely want to kind of factor in to going to Reddit to see a, ah, what people are talking about because you can have a look anyway, but also potentially actually starting some threads and using that as another kind of engagement tool to engage with people that might not necessarily be engaging through all of the other routes that we usually use through, you know, rare organisations or patient organizations.

Speaker D: It's a really interesting one. I think as we were going through it and we were reading out the findings from the, from the research, uh, Lauren said, you know, we've confirmed a lot of things that we've identified through clinical work or surveys or the things done very quickly, but it's the different lens and the lens that forums particularly give, so Reddit and other forums give is that, you know, a like minded community of people going through similar experiences, there's anonymity there, they don't have to disclose who they are. And that gives a completely different, uh, flavor to what people say and have, feel like they have the freedom to say, which is, um, often can be quite, quite shocking, quite sensitive, uh, for people on the outside side reading that. So it's kind of, it's raw, it's unfiltered, and it's something that you can't really get as, ah, uh, as readily through other means like, like surveys or even in clinical settings. Often when we're working with groups that include clinical practitioners as well, they often don't recognize some of the themes that are coming through from social listening. And they say, well, we don't hear that in the office when patients come into us. Uh, that's exactly the point. That's why we need to do this, to get that broad perspective and get that kind of raw, unfiltered perspective from caregivers and patients.

Speaker C: After we sort of got the initial sort of scoping report, we had a meeting with so the charity partners from the different conditions and a few other colleagues. And I think all of us commented on the kind of, the rawness that was coming through with it. And to be honest, I think we were all a bit taken aback and a bit shocked by how raw it was. And it made us all go, oh, okay, let's, let's sort of pause and think about how we use this. Because it did feel like it's such an unfiltered viewpoint into what people are talking about. And I think we'd have to think about more and how to dig into it. I don't know if you'd ever be able to. But what's really interesting, I think as well, is that, uh, this is potentially people who aren't engaging through other traditional methods with patient organizations or online groups dedicated just to that group where they have to go. And for some people that works really well and they will, you know, have a personality within that group and being part of that community is really important to them. But there's a whole section of the rare community that aren't interested in that, that don't want their identity as a rare disease patient to be the kind of primary part of their life or their identity. And so you can imagine that something like Reddit, where it's much more anonymous, might be more their vibe, and they might want to go there and still have an outlet to talk about what they're going through. And so I think there's a really interesting thing to explore There about is this access to the views of people that we're not hearing from all the time and that aren't really embedded in the rare community and how are they feeling about things and is there a difference in their experiences and also just, you know, on a really sort of basic level for us. So we have a wellbeing hub that uh, speaks to the experience of having a rare condition and we've disseminated it through all the traditional means and now we're like, oh, we just need to go and put some links for it on Reddit as well to make sure that people are finding it. So I think that's been sort of really useful that uh, insight of just. And a potential way to get beyond the traditional kind of community in which of ah, people that we're asking and be able to kind of compare and contrast their experiences. And there's some crossover but I suspect there's probably a lot of people that are going to Reddit because they don't want to be in a Facebook group where they know everybody.

Speaker A: Sure. Um, so we've discussed, you know, how quick we're able to get this project off the ground and it was a really efficient way to gather insights and we've got some unique ways and ah, different methods of getting these insights. So we've got a lot of insights. What did we actually do with those insights, Darren? How did we put them together for our minds?

Speaker D: When we apply all our filtering and um, our time span across the conditions that we looked at in the study, we were left with about 54,000 mentions for which we filtered for pronoun based filtering. So things that mention I, my we so that we're getting, that's indicative of uh, personal narrative. And then that brought us down to about 3,000 or so mentions for analysis. So we conducted analysis across those 3,000 mentions effectively and put that up into qualitative and quantitative data cuts effectively, um, where we looked at different themes that arose. So you know, several themes kind of rose to the surface. Emotional, psychological. We looked at the mental health burden associated with the physical symptoms of the disease, social and relational with getting a diagnosis. So we cut the data into those different themes on top of that to see what's different across the different types of conditions, um, what's similar, um, what things are a little bit, uh, I guess less well understood or less on people's radars. And then we looked at the emotional and psychological themes, rose to the tops of things like grief, anxiety and fear, uh, isolation and loneliness. For me of that group which was by far the biggest group. That emotional psychological group, caregiver exhaustion came out. And you know, we did have some pediatric conditions in, in the group of conditions that we looked at. So it's not surprising to see some, uh, a lot of caregivers mentions in there. But I felt that that grief anxiety was persistent across the caregiver groups, across the indications, and it was most noticeable in caregivers, I think, and that leading to feelings of exhaustion. And uh, I guess that kind of struck me as well compound the severity and the burden of the disease by not supporting the caregivers very often. And that was something that really struck me, something uh, I hadn't seen in previous research, uh, uh, which, you know, we didn't focus on this type of thing. But yeah, it really struck me as something that's persistent and a real need. Um, so, yeah, that was my biggest takeaway from the research.

Speaker C: Yeah, I think that's absolutely spot on as well. It's something that we talk about a lot as an organization that there's very unique challenges when you have a rare condition and very unique mental health challenges. And some of them might be as a result, you know, having the condition, sort of the grief, the loss, the uncertainty, some of it might be a direct result of the condition itself. So I think we had Cushing's, didn't we, of one of the conditions and we talked about, you know, is how much of it is actually the kind of hormonal impact of the condition itself. But there is this whole impact as well of just the kind of systemic failures to support people, whether that's in their caregiver need or as an individual, that creates a huge mental health challenge for lots and lots of people. And that's something that we talk about a lot. We talk about a lot, the need for kind of psychologically informed care. You know, a lot of people could have much better mental health in the rare community if the people they were seeing were just a bit psychologically informed around either signposting them when needed or just saying, you know, how are you today? Not just focusing on the symptoms. And I think you're right. I think that really came out through the exhaustion and the kind of just general stress and psychological people were talking about.

Speaker A: We've created a white paper in collaboration with Rare Minds, uh, around the study, and it's fascinating reading. Really powerful stuff actually in there. Um, Lauren, were you surprised by the data that came out? And also what have you been doing with this information subsequently?

Speaker C: I think we weren't surprised overall with the themes that came out, um, I think we were surprised by how raw the data felt, especially some of the quotes, which did sort of make us take a step back and consider how we use those quotes and whether we sort of go straight to public with them or whether we use them. And I think we've decided at this point we're going to use the report as a talking point and to generate conversations about the potential for this. But we're sort of holding the quotes back at the moment just because they feel so raw that we want to do a bit more conversation with the community about how they feel. Because although they're publicly available, they obviously weren't expecting them to be in a report that we would then publish. So I think we're sort of holding our hand on that one a little bit. But, uh, we've started lots of conversations around the kind of benefits and the potential use of this technology and trying to see how people feel about it. So I said we've had meetings with various other, um, voluntary sector, uh, organizations. I think most of them feel the same as us. There's huge potential here. And actually some of them have come up with potential uses beyond the mental health thing. So whether this could be used for evidencing need for medication, for example, you know, very small, rare communities struggle to get enough evidence to get their medication through or the sort of hoops they have to. Is there potential there also feeling like the same as us, like just sort of, we need to just know more and understand more. I think maybe the rare. I don't know if it's the sort of the voluntary sector as a whole or just the rare community. It feels like we've just woken up to this technology and the power it could have. I've spoke to a few academics as well, who all seem sort of really interested and a bit like, wow, I sort of hadn't thought of this. So we're going to take that forward. Um, uh, we've been talking to the Cambridge Rare Disease Research Network and thinking about what we might do with this and how we can take it forward. We're going to do a workshop at the RARE Summit in Cambridge in November. Uh, just kind of talking much like this, really talking about what we did and what we found and just seeing how people feel about that, how they think it could, should be used. How would people feel if they'd posted on Reddit and then they saw their quote in a report? And we're talking to a few other partners in the sector as well about events we might do. And then I think really we're just going to kind of see where it goes. Where we would like to get to is like, in a couple of years that, you know, there's some m. Really big research around this area, potentially using this. Because I think one of the things I haven't had a chance to say is that actually I think one of the potential benefits, as we see of this, is that you can find out without having to ask people. And obviously mental health is a really, really sensitive subject to ask people about. And, um, it can be potentially triggering, it can be distressing. You know, we did a survey a year so ago, it was in 2003 actually. And we thought really carefully about the questions we asked because we have a clinical responsibility for, first and foremost for everyone we work with. And we don't want to open them up to their distress without being able to then hold them or do something with that and kind of, you know, help them manage it at the end of it. So questionnaires and interviews are really, really important. But we're always saying you have to think about what happens to people afterwards because, you know, you might open up all sorts of things for them and then they're just left with it at home. And I think that's potentially where this could help us avoid all of that. Uh, you know, people are talking about this anyway. If we can find a way that kind of trusted and feels right to people and sits well, then I think there's huge potential to be able to understand more about the mental health impacts without having to ask people to talk to us about it. Which for us, really, unless they're doing it in the safety of a clinical session, we don't really want to ask them to talk about it.

Speaker B: Yeah, and I know getting really raw, unfiltered feelings that, you know, it's actually real and wrong, what people are actually really feeling and going through. And yeah, I don't think you can ever get that from a survey or going out and speaking to them because people are quite closed and they don't want to open up. You know, it could be they feel embarrassed or a whole symptom of different reasons why. So, yeah, it's, it's really exciting. I'm just fascinated, um, by the whole topic, to be honest, and fascinated as to what social listening can actually do and how it can really support and help patients.

Speaker C: Yeah, there's huge potential. I think we just have to make sure that everyone feels they're involved with the process and not that it's happening. To them, if that makes sense. And that's why our next bit of work is all these conversations to sort of see what people's parameters and that uh, they feel excited about the potential of this as well. And not that uh, it's another thing that's happened and been done to them, if that makes sense.

Speaker A: Yeah. With looking at it against this traditional method of questionnaires or asking people questions, even if you're trying to be as neutral as possible, there's always bias inferred in a question. The sort of questions you're asking, the order, the questions you're asking, the amount of questions you're asking. And to have a uh, forum where you're not actually asking questions, you're letting that information come to you is a real game changer in terms of the unfiltered um, nature, uh, of the comments and the information you're going to be getting. And I imagine at times there must have been some quite distressing things to have read. So it's not sunshine and rainbows but it's incredibly powerful raw information.

Speaker C: And also it's not people that are self selecting to take part, is it? That I think is, you know, a really interesting angle, is you know, very grateful to all the people that do take part in surveys and questionnaires. But you've already got a layer of filtering that's happening there. We know that there might be sort of, there's. If people don't have interest as a first language or if they have any sort of, you know, suspicion or fears around kind of healthcare structures, you're not always going to get all of the voices and I mean, I don't know, I don't think we dug into the representativeness of this data but it feels like there would be more potential to at least get a kind of broader spectrum of people's views. I mean we, we did do different languages, didn't we Darren?

Speaker D: And then we did, yeah, yeah, we covered European uh, languages. Yeah. So um, Castanet quite wide and yeah that's, that's one of the benefits of that uh, of this type of research. We don't have to, we passively collecting the data that people are talking about in their own language, in their own words come back to fill back, back in at what might be a survey in terms of the question. So if we're looking for themes that are emerging, we can filter for that or we can see what themes emerge, um, um, and build our analysis on the back of that.

Speaker B: This is global. When you look at uh, when you Go into a social listening project. Can you filter by countries or can you go kind of globally for.

Speaker C: We did Europe I think, didn't we?

Speaker D: Yeah, we looked at Europe but we, we have the ability to go down as far as uh, regions in some instances, so uh, parts of countries, uh, provinces, et cetera, um, all the way to global, um. And because the nature of the technology, it's collecting everything, so it's language agnostic and then it supports the analysis of that data in about 40 languages. Then on top of that, so we collect all the data in every language. It will run some initial data cutting for us in 40 languages and if there are things outside of those 40 languages we can have a look at piece by piece. There doesn't tend to be a lot, uh, to be honest, but um, we have the capability to do that.

Speaker C: I think that was one of the things that one of the groups that came to our feedback meeting was really interested in as well, wasn't it one of the organizations there. I mean I think a lot of the, when we were talking to the charities about it, most of them were like can it do this and can it do this? Yeah, I think definitely huge potential.

Speaker A: It's been great collaborating with the organisation and I know that Darren and the analysts who have been involved in the project felt a real privilege and Keenan um, said it was a real privilege to bring these emotional realities to the forefront and it's, you know, it's important work we're doing and I think doing it with a like minded organisation who's trying to get the best for the rare disease communities is something that I think we should celebrate and hopefully we'll be doing more collaborations in the future.

Speaker C: Yeah, I think we were really grateful as well. Just to say the team that worked this was great and we were really grateful to how everyone sort of took on board just things around like the language that we use and how we would talk about things and you know you can send people that information but it doesn't feel that they always necessarily take it on board. But it did feel like that was very much then kind of reflected back in the report that we had and just, you know, the way that we would choose to talk about things. We felt like that was very heard. So yeah, super grateful to Darren and the team.

Speaker D: Our pleasure. It was uh, a privilege to be involved in this and as we've mentioned several times now, you know, the mission alignment was key but that kind of drove that motivation amongst the team on our end to try and make it the best piece of research we could, you know, we just really hope that it helps drive the conversation forward. It helps support the shining a light on the absolute need for addressing mental health challenges in the whole context of rare conditions. And I hope that that raising awareness and that it helps with getting integrated supports uh, for different services for people with rare conditions and um, yeah, looking forward to where this goes next and

Speaker C: do a follow up in like a year's time.

Speaker D: Yes, that would be fantastic.

Speaker A: Lauren, as we wrap up, what's next for RareMinds and the Chief executive?

Speaker C: Well I don't know about me personally but uh, we're gonna, I mean as I said first and foremost we are a service provider so we are, we're really excited to be bringing on sort of new charity partners. We're also exploring um, how we can get support out there as widely as possible. So we have a wellbeing hub that I mentioned. We're going to be writing three new portals sections for that hopefully to launch by the end of the year. Um, so we want to keep growing that because not everyone can access counselling but that's a sort of frontline thing. Yeah. And really just looking as I said to sort of fill the research need. There's a finally kind of attention being paid at uh, sort of national policy level to mental health and rare conditions but the sort of evidence is lacking. So I'm hoping that all of this can really help feed in to sort of fill that gap as well and we can start to see some really significant changes with you at helm.

Speaker A: I'm absolutely sure we will and it's been a pleasure to have your company and to be working with you over the last few months and um, yeah, all the best with the future and thanks so much for joining us.

Speaker B: Thanks Lauren.

Speaker A: Thank you for listening to the discussion. You can find more information about this subject and other matters relating to rare disease and cellar gene therapies of the insights section of our website www.partnersforaccess. Com.