Swamy Venuturupalli, MD and Katja Reuter, PhD on Twitter as a Research Tool for Lupus

Drs Venuturupalli and Reuter discuss their latest research into whether Twitter can be a source of patient information.

Swamy Venuturupalli, MD, is a rheumatologist at Attune Health, affiliated with Cedars-Sinai Medical Center and an associate clinical professor of medicine at the David Geffen School of Medicine at University of California Los Angeles.

Katja Reuter, PhD, is a research assistant professor of Public Health at SUNY Upstate Medical University.

TRANSCRIPT

Allison Casey: Welcome to this podcast with the Rheumatology and Arthritis Learning Network. I'm your moderator, Allison Casey. Today we're joined by Dr Swamy Venuturupalli, a rheumatologist with Attune Health, affiliated with Cedars-Sinai Medical Center and a clinical associate professor of medicine at the David Geffen School of Medicine at the University of California, Los Angeles. And also Dr Katja Reuter, a research assistant professor at SUNY Upstate Medical University. We're going to talk about their study looking into harnessing social media to identify diverse lupus patients and gather their perspectives on disease symptoms and medications. Thank you both for joining me here today.

Swamy Venuturupalli, MD: Welcome. Thanks for having us.

Katja Reuter, PhD: Hi.

Allison Casey: All right. To begin, could you just give us an overview of this study that you did?

Dr Venuturupalli: Thanks, Allison. I'll take that question. So we wanted to look and see how patients with lupus specifically were using Twitter. And we had access to tweets from lupus patients and lupus related groups, and we wanted to analyze them and understand how this is being done. And so we studied about 47,000 tweets in English, which were posted by about 8000 patients or so between 2017 and 2018. And then we analyzed this data to describe what the patients were expressing and what kind of themes they were talking about; what their medicines were, or symptoms, et cetera. We then analyzed all of this and summarized our main findings. We found that patients with lupus were very diverse, actually in both gender, as well as race, and about a third of them were people of color, about 85% or so were people were females. And a lot of these patients actually expressed their disease symptoms as well as their medicines.

And we found that there was a lot of variability by gender, as well as race, and how they were expressing these findings. And also, we were able to correlate some of these expressions of their symptoms and disease states with several clinical observations. For example, a lot of patients talked about their pain. Some patients talked about flare, some patients talked about fatigue, et cetera. So we were able to gather a lot of insights on how patients in the real world communicate about their symptoms and their disease, very specifically about lupus and able to gain a lot of insight from this study.

Allison Casey: How did you and your colleagues first become interested in the area of social media and lupus?

Dr Venuturupalli: Katja was an invited speaker to the American College of Rheumatology annual meeting. And I was a moderator for that session. We were very interested in bringing ideas about new technologies and how they might affect the field of rheumatology. And this was several years ago and I was really impressed by how Katja was able to harness a very publicly available database that could analyze tweets made by our patients. I was also very aware that a lot of our patients are very active on social media. And so analyzing tweets and doing research on them seemed a really interesting possibility. And I started talking to Katja and she had already done` studies like this in other fields, including oncology. So that got me really interested in it and I wanted to bring it into rheumatology. So we talked to Katja and she was really gracious enough to talk to us and spend her time and share her expertise and bring this to our patients.

And we decided on lupus specifically because there's a couple of organizations that we're affiliated with at Cedars, including Lupus LA, and even in my own practice at Attune Health, where a lot of our patients are very actively engaged in Twitter and social media. And they gave us some feedback from a patient perspective as well, that, yes, this is exciting, I spent a lot of time on Twitter. So we wanted to understand from a research perspective, what are they actually spending time on Twitter? Are they talking about shopping? Are they talking about their lupus symptoms actually? And that had never been done. So we wanted to take a look at it and that's I think the genesis of the study.

Dr Reuter: I can only add that I have looked at social media based patient reported data on a couple of different types of diseases. And to me it's always very interesting to work with clinicians because they're so close to taking care of these patients. They know very well how many patients think. At the same time we know and we hear from some patients that they don't necessarily feel heard by clinicians. So sometimes you get the sense that maybe by looking at this unprimed data type, right, these people, they talk about their diseases, mostly to connect with peers and to find information, these are some of the main reasons why they use these types of media. And by looking at this type of data we might find gaps in clinical care or things that we haven't necessarily thought about in the clinical community. Or also trends like for example, the impact of the COVID-19 pandemic on particular disease populations. So that's why I think social media is very interesting and it's not yet harnessed in a systematic way by the clinical community.

Allison Casey: Going off that, can you talk about how patients use social media in general? You mentioned a little bit but what brought you to consider social media as a data source?

Dr Reuter: Using social media for this type of analysis, for looking at patient perspective data, that's not necessarily something new. So researchers have been using Twitter based data, for example, and also patient reported data from other networks, social media platforms, for a couple of years now. Public health researchers have done that too, for example, look at disease outbreaks and there are less studies that have looked at specific patient populations. But we know, like I said before, that patients use social media, for example, to find peers, to connect with them, to find support. That's one of the main reasons. But they also, like many patients in general, they use the web to search for information, for example, about the latest treatments or medications. So it's just a part of their life. And using that type of data then is like a natural extension to what we are doing anyways as researchers.

One can think of social media as an unconventional focus group. So in science, we often conduct focus groups. We bring small groups of patients together, and then we do qualitative studies to learn about their disease perspectives, their patient experiences. And when you think of social media, it could be considered, and some research say that, have been saying that for some time, you can consider social media as a gigantic focus group. The challenge for us researchers is that there's a lot of clutter, noise, so we need to take special care to make sure we analyze the data very carefully.

Dr Venuturupalli: I would like to add to what Katja said. I mean, I think that's a really critical idea, doing research in rare diseases like lupus requires a lot of time and effort and understanding what's going on in between the patient's visits, when they're at home, in their own setting. It really interested me because we all know as rheumatologists that are patients with lupus, they do well for a period of time. And all of a sudden, they come to you and they're like flaring, and there's a rip rolling flare going on. We have no idea of what happened in between. And that really excited me and interested me because I wanted to understand what was going on. And Katja has presented this concept of thinking about social media research as a gigantic focus group. And that really got me very excited and wanted me to do this study as well.

Allison Casey: Why is it so important to have a diverse patient pool, especially when studying lupus?

Dr Venuturupalli: Lupus is an interesting condition. We know from really good data that people of color are particularly affected adversely. Their outcomes are much worse than others, Native Americans, African Americans, Latinos, Latinas. They seem to get a much more severe variant of this disease. Moreover, we also know from our past experience that there is a lot of hesitancy with people of color participating in traditional research methodologies. It's interesting that we are in the 2022, and there is a recent study that shows that even now people of color who get lupus nephritis, for example, seemed to progress to end stage renal disease at a much higher rate than non African Americans, for example.

And so those sorts of data behoove us as a research community, as a rheumatology based community, to really spend time and effort trying to understand how to connect with these particular patients who are getting the most severe forms of the disease and seem to progress to bad outcomes at a much higher rate. So I would argue that this is a critical aspect of getting better care in lupus is to focus on this particular group of people and understand what drives their disease activity and how they experience their disease so that we may understand how to help them better.

Dr Reuter: Yeah, I would totally agree with that. And just want to add that I think the whole point of research is to develop solutions. And we know already that there is no silver bullet that particular populations or specific populations, they might have different needs. They might have different patterns in the way they react to a treatment and the way they describe, for example, a treatment. That's why it's so important to have different populations included in research. So we can actually address their needs with the work that we do.

Allison Casey: Dr Reuter, you mentioned that social media is kind of an unconventional focus group. And Dr Venuturupalli, you said that sometimes patients of color are hesitant to involve themselves in conventional means. So I wonder if you could talk a little bit more about how more conventional means of health data gathering can fall short, especially when considering this inclusion of more diverse patient populations.

Dr Venuturupalli: So I can start, you know, as rheumatologists who are listening to this podcast are extremely familiar there's a lot of time pressure on practicing rheumatologists. And focus groups and other qualitative methods of research and even other quantitative methods require the setting up of databases where there's a collection of meaningful data. And that's very a resource intense and most practicing clinicians don't have the bandwidth necessarily in their practices to add that sort of data collection into their normal clinical processes. I would argue in fact, that even academic centers have a difficult time collecting that sort of data.

Moreover, patients who are at academic centers, at tertiary care centers are not the whole picture. They're small minority of the patients who actually end up in those sorts of centers. So I would say that for all these years that we've been doing research and lupus, while we have made a lot of progress, collecting meaningful, reliable, accurate data in a longitudinal fashion is really challenging and tough. And it requires a lot of intense effort on the part of researchers as well as patients, which is why I think we fall short. So trying to get creative and trying to get to that same answer using other methodologies is really important and will help us move the field forward.

Dr Reuter: Yeah, I think that's a great point. The point that we wanted to address with the study is there's a lot of hesitation to use this type of data. So I think we will have to do more work to show to what extent this data is reliable. For example, I personally, I don't know of a study that shows that patients pose or... healthy people pose as patients, but there is no research that has shown it, but some people are concerned about that. And so I think we need to do work to develop systems and standards to use this type of data. We need to do work to develop resources and capacity to look at this data in larger numbers. And to be frank, there is not a good funding mechanism in place that allows us to use and analyze this type of data.

So I think there is a little bit of a gap that could be addressed not only for lupus research, but for research in general, to kind of move this field forward. Because it is data that exists. It is data that is there that we can use. It's just that I think most people don't have the means to do so, be it skills or research capacity and infrastructure. And at the same time, we all know that this type of data be it patient reported outcomes or patient generated health data, which is just an umbrella term that includes, for example, patient reported outcomes, it's a little broader.

But that data sits on these different various platforms. And if we have ethical guidance and ethical support to look at this data in an ethical manner, that's very important, then I think otherwise it's just a loss for us not to look at this type of data. So just in summary, I think it's really important to use, find ways to use that data because when assessing concepts best known by the patient or best measures from the patient's perspective, right. If we have that data available, why not use it?

Allison Casey: Focusing on your particular study, what were the most important findings that you came about?

Dr Venuturupalli: At the risk of taking away too many specific findings from our study, I think the real finding from a rheumatologist perspective is that our patients are very active on social media. We now have research tools which can listen in to those conversations and we have methodologies and we have research trained professionals such as Dr Reuter who can help us really glean insights from what's going on out there. For me, I would say that's the biggest takeaway. The other big takeaways from a rheumatology perspective are that the people who are engaging on social media are very diverse by gender, as well as race and ethnicity. And this allows us to really listen into those conversations that we as clinicians and researchers may not have access to under normal circumstances and using the normal channels. Having said that, we also found that our patients really expressed a lot about their disease.

I mean, the disease seems to involve a central part of their lives as we start listening into some of these conversations. For example, our patients, they really expressed their disease symptoms. They talked about their medicines, they talked about side effects. They talked about symptoms like eye symptoms, and they talked about their pain. They talked about interactions. They talked about all of these things that we think are really important to know as researchers and clinicians. But I would say the biggest takeaway for me is that there's this awesome data source that we can tap into. This is a real proof of concept in that sense. And I think that we were able to show that lupus patients in particular and rheumatology patients in general can be reached through these very innovative methodologies.

Dr Reuter: Yeah. I would echo that. I think if we can create or if we can state this as a proof of concept and we can showcase the potential of this type of data, I think that would be a huge win. And then for me personally, I think if we can spark research, support, and funding with these types of studies to get more support and then to further develop this area would be fantastic.

Allison Casey: What does the study mean for providers today seeing patients, how can they use this data or these findings in their day to day practice?

Dr Venuturupalli: I think future is really where this points us too. And shows as a guide saying that we can maybe replicate some of these studies and Twitter itself, but also look beyond Twitter. There's other social media platforms that patients are very engaged in. We want to understand which platforms they're using. It might be Reddit, it might be Facebook, there might be other platforms that they really engage with and get information from. And in that situation, I would say researchers and clinician rheumatologists should be able to connect with their patients on through these methodologies.

Dr Reuter: Yeah, I would agree. I think in terms of next steps, it would be nice to be able to replicate some of the work that we've done and look at other platforms. But I think Twitter is not only a data source, it's also a platform where we can potentially test interventions, health promotion interventions, other types of interventions to improve the lives of people with specific diseases like lupus or other types of diseases. And I think a lot of researchers are still trying to figure out what this could look like. There are a couple of studies, but I think there's a lot more work to be done. And for me, the final question is really like Swamy said, if we have this type of data, how do we bring that data into the clinical conversation to potentially inform clinical care or also really highlight gaps that then can be addressed or even barriers to certain healthcare options. And so I think having conversations about that would be really interesting as well, because I think we don't know the answers yet.

Allison Casey: So definitely a look to the future. Thank you both so much for taking the time to join us. We really appreciate it. We look forward to maybe having you back in the future.

Dr Reuter: Thank you so much.

Dr Venuturupalli: Yeah. Thank you so much, Allison. This was great. Really appreciate you highlighting our study in particular, but more importantly, the fact that this sort of research can be done effectively and hopefully we will be able to move the field of lupus research forward.