Social media has become an integral part of modern society, profoundly influencing daily life, from communication to entertainment. Researchers are now turning to these platforms to explore how social media can be used to share health information with the public.
These online platforms and tools enable users to create, share, and engage with content, as well as to communicate and interact with others all over the world in virtual communities, with more than 5 billion users actively using social media, such as Facebook, Instagram, and TikTok, every month. Social media platforms not only facilitate global connectivity, they also represent unprecedented opportunities for information sharing and community building. This abundance of public correspondence and information can be used to help researchers better understand the impact that social media has on health, especially mental health.
Two researchers at Advancing Health, Drs. Skye Barbic and Daniel Vigo, are using social media as a tool to gather information on what people are sharing online with regards to mental health. They are especially interested in understanding younger populations — more than 50 per cent of mental health issues are established by age 14 and 75 per cent by age 24. Given the popularity of social media with youth and young adults, the platforms where they are communicating with each other are an important source of information to help inform care.
“One of the biggest barriers to receiving mental health care is accessibility, especially since so many people need support,” said Dr. Vigo, recently appointed BC’s Chief Scientific Advisor for Psychiatry, Toxic Drugs, and Concurrent Disorders. “Social media provides an accessible and popular resource where people are able to connect with each other to discuss their experiences and share their stories. Because these social media platforms are public, they provide an excellent resource for data that can be used to help guide research while providing context.”
Exploring TikTok
In 2021, Dr. Skye Barbic, Associate Professor with the Department of Occupational Science and Occupation Therapy at UBC, published a ground-breaking commentary highlighting the importance of paying attention to the potential health-related implications of TikTok. “At the time of writing the commentary, the hashtag “mental health” (#mentalhealth) had over 1 billion hits,” said Dr. Barbic. “Since then, that number has risen to 136 billion — more than 15 hits per person on the planet — which means that people are discussing mental health online. A lot of it is anecdotal where people are describing their experiences of accessing care.”
Dr. Barbic also noted that during the pandemic, young people felt that they were not provided with information to help them through a challenging time, often feeling misheard and even villainized by public health. Many turned to social media to communicate and support each other. Research has also shown that youth are unsatisfied by the lack of online information targeted to their demographic, which is partly why TikTok became an easily accessible search engine among younger generations.
Realizing the potential of this public database of information, Dr. Barbic and her team developed a research project to explore how TikTok was being used as a tool for mental health information sharing and community building among youth. The project was championed by Marco Zeonone and Roxanne Turuba, Research Associates at UBC and members of Dr. Barbic’s team, and involved the hiring a team of youth to help scrape and analyze the TikTok video data and conduct interviews with other youth who used TikTok to navigate mental health information and topics.
“There was a lot of interest in this topic. We had no issues finding youth who wanted to contribute their expertise on this project for us and the recruitment for interviews went very smoothly too,” explained Dr. Barbic. “I think part of why we were able to garner so much interest is because we weren’t inquiring about personal mental health experiences, but more on what information youth were accessing. Plus, young people are interested in getting involved research in general because of the potential long-standing impact on their lives.”
Access, connection, action!
There were several insightful findings from this initial study exploring mental health trends on TikTok which fell within three themes.
The first theme centered on how TikTok provided easy access to both mental health information and support. Considering how challenging it can be to access mental health resources, which was exacerbated during the pandemic, having an online community to share stories with others who are having similar experiences was very important.
“It was interesting and helpful hearing people talk about those things…like experiences of autism. That’s not something that I’m really comfortable seeking mental health support for so I am finding it really interesting and helpful, like informally listening to people talk about it and kind of learning more about it and how it might apply to me in that way.”
Participant 03
The second theme highlighted the quintessential nature of social media: connection. TikTok provided a safe space for youth to discuss mental health which led not only to the awareness of various mental health conditions, but facilitated the normalization and de-stigmatization of these conversations. Also, because of how many people actively use TikTok and how quickly it is able to respond to user interactions to promote content, youth were able to find more people they could relate to.
“I liked how it also gave platforms to people who were marginalized and kind of overlooked on other platforms. I saw a lot more of those kinds of people on TikTok than I had on like Instagram, for example, and it kind of made me and a lot of people feel seen.”
Participant 01
The third theme focused on how their interactions on TikTok led to action in the non-virtual space. Being able to access a supportive community online inspired youth to try different coping strategies, have conversations with friends and family, access mental health services, and gain a sense of confidence to advocate for themselves.
“…people on TikTok talking about going to therapy, that persuaded me to go to therapy and then also made me feel a bit more comfortable going to therapy too…I feel like TikTok helped normalize that a lot.”
Participant 06
An important thing to note is that throughout this study, youth noted the potential negative impact of social media on mental health, as well as prevalence of misinformation across online platforms. Additionally, youth were not using TikTok as a diagnostic tool, they were using it for peer support and information to help guide their decisions regarding their mental health.
“I don’t think TikTok is the best way to deal with a mental health crisis or to deal with…if you’re trying to diagnose yourself. I think it can be almost harmful in those ways, but I do also think that for people who are trying to, you know, figure themselves out more in relation to mental health, that it can be very beneficial in finding coping mechanisms.”
Participant 17
Roxanne also highlighted that there appears to be a network, not dissimilar to peer review, when it comes to sharing information on TikTok. “People can leave comments on videos, and we found that, during our scouring of video information, people would comment that they had similar feelings or experiences or point out something is not true,” she said. “If a comment receives a lot of likes, it’s brought to the top of the comment list and the youth could second guess what was being shared if the comments below the video were pointing out that the information isn’t true. That was insightful to see.”
The research team is now pursuing further analyses through collaboration with a psychiatrist to review the mental health content being shared. The goal is to determine how much information is accurate and what is inaccurate, although only small proportion of the information available online can be analyzed. But what if there were tools to help researchers find themes among endless social media data?
Combining AI with social media
Dr. Daniel Vigo and his team used state-of-the-art natural language processing methods, recognized today as a form of AI, to analyze social media text data. Dr. Vigo’s article demonstrated that their model could gather information from social media, in this case Reddit — a popular interactive mini-blogging site — and parse large quantities of unstructured data into coherent themes. The model can even identify entire sentences corresponding to topic-specified words.
“The AI-based software platform massively enhances our ability to analyze social media data in real time by clustering posts into coherent topics and pinpointing sentences related to user-defined themes,” he said. “This tool allows researchers to transform vast, unstructured datasets into actionable insights to better understand the trends of what people are sharing online when discussing mental health.”
This model was initially tested on Reddit posts to better understand the mental health needs of Canadian university students. The first test case evaluated data from 2020, at the beginning of the COVID-19 pandemic, to 2022. Sentiments shared were around staying home including feelings of alienation, as well as exhaustion and concern about protecting others. Students on Reddit were also asking about mental health supports and what was available to them as part of their health plan. The second test case looked at a housing-related theme, with the article highlighting a link between student meal-plan arrangements and discussions of burnout and eating disorders.
Dr. Vigo and his team, including Advancing Health scientist Dr. Chris Richardson, recognizing the impact that online communities have on youth and the importance of accessibility to care, noticed a lack of clinically tested mental health support. To fill this gap, they developed the Minder app, which they tested in a randomized controlled trial. The app was shown to effectively reduce symptoms of anxiety and depression while providing support for increasing mental well-being, leading to reduced cannabis and alcohol use. While searching for participants for the trial, the team also turned to social media as a key tool to reach potential participants, something that many other researchers are now doing to improve recruitment.
Recruiting youth in research
Social media is both a hub of information and a hub of people, and it can play a crucial role in a very important aspect of conducting research — recruiting participants. Facebook, Instagram, TikTok, X (formerly Twitter), LinkedIn, and several other social media platforms not only provide the opportunity to share posts asking for study participants, but they also provide very affordable advertising options, with tailored parameters, such as geography and age, to reach out to potential study participants who might not be frequenting health care facilities and services where study recruitment opportunities are traditionally posted. Posting on social media can be very effective in recruiting youth in research because it involves meeting them where they already are, online.
Several scientists at Advancing Health have successfully used social media to advertise opportunities to youth participate in research studies. Dr. Vigo posted on UBC’s subreddit looking for students to test the Minder app which has over 102,000 members. Dr. Barbic has used social media, not only to recruit study participants, but also to find youth researchers to be involved in her several projects focused on youth mental health. Dr. Sarah Munro, Advancing Health scientist and Assistant Professor, Health Systems and Population Health at the University of Washington, and her team used social media to recruit youth across Canada to participate in the Ask Us project which investigated the barriers youth face when accessing contraception.
The integration of social media into mental health research marks a transformative shift in understanding and addressing the mental health needs of youth. Platforms like TikTok provide free access to personal experiences and community support, facilitating the normalization and de-stigmatization of mental health discussions. Researchers are starting to harness these platforms to uncover trends and identify gaps in many different health services, not just mental health, which can not only enhance the understanding people who are sharing their lived experiences, but also pave the way for innovative solutions such as the Minder app. As social media continues to grow, the collaboration between social media and mental health research holds immense potential to improve accessibility, support, and outcomes for young people.
