Introduction

Bipolar disorder (BD) is a mental health condition affecting 2.5% of the global population [1], characterized by distinct periods of elevated mood (i.e., mania or hypomania) and depressed mood that can profoundly alter thinking and behaviour [2]. These mood states can seriously impact ability to engage in typical activities of daily life; BD is linked to personal, societal, and economic costs, and is estimated by the World Health Organization to be the 6^th leading cause of disability worldwide [3]. Bipolar disorder is associated with higher mortality and shorter lifespan, due to concomitant physical health problems and incidence of suicide [4]. Despite the serious impacts of mental health conditions like BD, allocation of research funding towards the condition from both public and non-profit sources is disproportionate to the level of need, especially when compared with the amount of funding provided for physical health conditions [4,5]. Even among mental health conditions, funds are especially limited for BD–a report commissioned by Bipolar UK found that though BD accounts for 17% of the burden of mental illness in the UK, the condition accounts for only 1.5% of mental health research funding [4]. This underfunding has implications for research and service delivery. For example, the Bipolar UK report stated that 75% of women living with BD experience menstruation related symptom fluctuations, yet only 14% received information from their clinicians on hormonal influences in BD [4]. Discrepancies like this highlight how underfunding of BD might maintain a dearth of literature on clinically relevant subjects that could improve the health, wellbeing, and social functioning of individuals living with BD.

Given current inadequate funding of BD research, effective use of limited resources is vital. It is therefore necessary to take a considered approach towards selecting research directions most likely to yield impactful, clinically relevant outcomes. It is increasingly recognized that involving people with lived experience in shaping research agendas can enhance the relevance of research questions, as well as bolster community willingness to participate in research and increase the likelihood of research being translated into practice [6,7]. However, multiple studies have shown that people with lived experience of health conditions and researchers/clinicians do not always concur on priorities for health research [8–10]. For example, a priority-setting participatory research project found that the priorities of mental health providers were distinct from mental health service users: while providers elevated the importance of biomedical research, mental health service users showed more interest in social and psychological research [9]. A scoping review of 74 mental health priority setting exercises found that this pattern was reflected across studies, with rank ordering of research priorities differing between researchers and mental health service users [10]. Though both groups emphasized the primary importance of researching psychological interventions, researchers placed more emphasis on accurate and timely diagnoses, research methodologies, and research standards, while service users valued research concerning education and psychosocial aspects of mental health disorders. In recognition of such findings, many funders now ask that researchers demonstrate how their research plans address community priorities [11]. Amplifying the voices of people with lived experience is also a key step towards addressing historical power imbalances and inequalities [12,13], as people with mental health conditions have often been excluded from making decisions about the healthcare and services which impact their lives.

To address the need for clinically relevant research and service provision, a number of consensus-building studies have been conducted to incorporate lived experience perspectives in developing research agendas and shaping service delivery for BD. Though these represent valuable contributions towards the goal of amplifying patient priorities, a recently submitted scoping review of existing consensus building approaches in BD identified several major limitations [14]. Notably, there was a lack of inclusion of stakeholders from diverse backgrounds: few studies were adequately diverse across age, race and ethnicity, gender and sexuality, spoken language, and history of engagement with mental health supports [14]. This low representation is likely due to small sample sizes and use of convenience sampling approaches [15], which bias participation towards individuals already well-engaged in research and healthcare networks. A second limitation identified by this scoping review was that mental health services users who are retained as participants in consensus-building projects over time tend to be those who are engaged and interested in the topic [14]. Repeated consultation of the same experts may bias findings, as those with more severe course of health problems [16], those facing economic barriers to participation [17], those with lesser interest in the research topics [18], and those from marginalized backgrounds may be less able to engage [19]. Altogether, there is a need to complement existing priority setting exercises with methods that can describe the unmet needs and interests of a broad spectrum of people with BD, especially those outside usual circles of participation.

One efficient, cost-effective, data-driven approach to understanding lived experience research priorities is to turn to online platforms that organically facilitate this dialogue. Individuals with mental health diagnoses increasingly utilize social media platforms to exchange and request information and support. A commonly used platform is Reddit, a social media service combined of “subreddits,” topical communities where anonymous users discuss specific areas of interest [20]. Reddit has been shown to facilitate discussion on stigmatized topics, including mental health, likely due to its anonymity, group rules, broad accessibility, and power of community [21]; de Choudhury et al. found Reddit appears to facilitate greater disclosure and support about mental health than other platforms [22]. For example, the r/bipolar subreddit provides a social support network where users living with BD seek support, as well as share advice, information, coping strategies, and personal experiences [23]. Analyzing the experiences of individuals expressed on Reddit may give insight into the unmet needs and interests of people with BD, especially those with marginalized backgrounds, those not engaged in treatment, and those from rural areas. They may also capture perspectives of individuals for whom English is not a second language due to the availability of translation software. A semantic network analysis of r/bipolar found that common discussion topics were medication, financial problems, and sleep disorders [24]. Similarly, a topic modelling and sentiment analysis of r/bipolar found that users commonly share personal experiences, seek advice, and express emotions [23]. Studies like these demonstrate how the ability to quickly and automatically analyze this discourse using Machine Learning (ML) and Natural Language Processing (NLP) presents compelling opportunities to highlight public health research questions as expressed by individuals with lived experience in naturalistic contexts [25].

For the past five years, The Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD) has facilitated a 48-hour long “Ask Me Anything” (AMA) discussion via Reddit. CREST.BD is an international BD research network that has led knowledge exchange initiatives to disseminate BD research findings to the broader community. The AMA is hosted annually on World Bipolar Day to connect the public with a panel of BD specialists, including researchers, mental health clinicians, and people with lived experience of BD, many of whom are associated with CREST.BD as ‘peer researchers’. The panelists answer user-submitted questions in a bidirectional interaction between knowledge users (Reddit users) and knowledge generators (here, academic researchers, clinicians, and peer researchers). The resulting knowledge exchange is thus personalized to the needs and interests of individual knowledge users who ask questions. This contrasts with other community-facing knowledge initiatives (e.g., webinars, podcasts, blogs), where information relay is based upon knowledge generators’ impressions of what is relevant to the community, and the format is less responsive to the needs of individual users. After five years of the AMA Reddit event, the AMA threads contain valuable insights into the priorities of BD communities and present an opportunity to highlight the important questions, topics of interest, and ongoing concerns of those affected by the condition.

The aims of this paper are twofold: 1) to provide an in-depth description of the methods we iteratively refined over the course of conducting five BD-specific Reddit AMA events, and; 2) to share the specific community priorities identified based on our prior BD AMAs using the topic modeling technique BERTopic. Our first aim will contextualize our analysis and enable other health researchers to benefit from our learnings from this novel form of knowledge exchange. Our second aim will provide new knowledge to the BD research community about the priorities of people living with BD around the world. Our hope is that this analysis will help guide future mental health research and knowledge exchange initiatives, whilst also amplifying the voice, questions, and concerns of people living with BD.

Methods

Results

Reach and engagement

The AMA events between 2019 and 2023 (Table 1) generated substantial international participation and engagement, and, to our knowledge, represent the largest online BD-specific AMAs to date. For example, the 2023 event included 68 panelists, generated almost 1,700 comments, and exceeded 1.1 million views on Reddit. Cumulatively, the five events garnered 11,346 upvotes and 6,159 comments. In terms of panelist engagement, in total 159 BD experts from 14 countries participated on one or more occasions, reflecting broad international representation.

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Table 1. Statistics for each year’s AMA.

https://doi.org/10.1371/journal.pone.0338622.t001

Topic modeling

In the first topic model, which was run using the described hyperparameters but without setting a topic limit, BERTopic found 45 topics, covering 1,539 of 3,017 participant posts (51.0%). We then used nr_topics to constrict the number of topics to 10 and 20, covering the same number of posts.

In Table 2, we show the result of using topic representation generated by ChatGPT 3.5 Turbo with nr_topics set to show 20 topics, which we found to be the best balance between specificity of topics without needless granularity. The resultant 20 topics cover a wide range of BD-related themes, with the common topic, Topic 1, being interpreted by ChatGPT 3.5 Turbo as “Misdiagnosis of BD.” This arose 575 times across the 1,539 documents included in the analysis. This topic encapsulated questions about misdiagnosis and differential diagnosis, and open-ended questions and critiques about the diagnostic criteria for BD. The next most common topic, Topic 2, relates to the AMA itself, with users expressing gratitude, commenting (mainly positively) about the quality of the answers, and, in some cases, commenting on whether questions had been answered and musing about preferential responses to some questions over others. Topic 10 clustered posts similar to Topic 2 without clear differences aside from the comments being generally briefer and less specific. Topics 3, 14, and 17, and topics 5, 7, 11, and 13 were related to substance use) and medications respectively. Users expressed interest in novel pharmacotherapies, especially those using substances commonly used for recreational purposes, like cannabis, psilocybin, and ketamine. Regarding prescription drugs, user comments varied from questions about their current medications (e.g., asking about the therapeutic dose of lithium, or whether an antipsychotic dose may be “too high”); querying about pregnancy and medication safety; asking how to minimize unwanted side effects such as weight gain and fatigue; and sharing both positive and negative testimonials about their use of specific medications. Topic 18 addressed both use of DBT workbooks as well as soliciting panelists’ opinions about Thomas Szasz’s book, The Myth of Mental Illness; the documents in this topic seem to have been clustered together based on the shared feature of asking about mental health books.

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Table 2. Final topics, keywords, and representative quotes per topic.

https://doi.org/10.1371/journal.pone.0338622.t002

Other topics were related to BD symptomatology, and ways for coping with one’s own BD or ways of supporting loved ones with BD. Three topics focused on diagnosis and symptoms: Topic 15, “Cyclothymia” “Suicidality”; and Topic 6, “Understanding Hypomania”. When asking about these topics, some users were requesting diagnostic definitions, or information regarding prevalence rates. Others were seeking to understand their own experiences and stated their mental health symptoms (e.g., explaining anxiety disorder symptoms and questioning whether that fits with a diagnosis of cyclothymia). Topic 8, “Coping with Daily Challenges”, included questions about mood tracking and recognizing an episode may be imminent, and how to cope with challenges like BD-related interpersonal problems and lowered quality of life. Another topic, Topic 16, was found specifically for the ketogenic diet), with users asking about the present research on the topic, conversing about media suggesting this diet may be supportive of BD, and sharing their own experiences (with some recommending the diet, and others advising against it). BERTopic also identified a cluster of posts about how to support family members with BD, Topic 4, which often focused on how to encourage a friend, family member, or partner to seek appropriate treatment for diagnosed BD, or to convince a loved one suspected of having BD to seek a diagnosis.

Discussion

The goals of this paper were to: 1) describe the methods used by CREST.BD to deliver five consecutive years of a BD-specific Reddit AMA, and 2) to apply NLP techniques to extract key themes from these conversations that signpost the research priorities of people living with BD. The AMA events received significant community engagement, with 11,346 upvotes, 6,159 comments, and 2,013 questions submitted in total. This indicates community need and interest, and demonstrates the utility of online community events for knowledge exchange and consensus building activities. The event also attracted the efforts of panelists with varied BD-related expertise internationally, with 159 panelists in total. In describing the methods to bring about this successful event, our hope is that other research teams will take on similar events and improve accessibility of knowledge mobilization and exchange with populations living with chronic health conditions.

The present analysis highlights the potential for employing Reddit-based community engagement events to gain insights into the unmet needs of people with mental health conditions. A previous scoping review highlighted that the largest priority setting exercise for BD to date was a survey with n=198 participants [37]. This survey was also quantitative in nature, meaning that initial priorities for inclusion in the survey were generated by the research team, and may not have reflected all topics of concern or interest to people with BD. Although we did not calculate the number of unique respondents (and indeed, this is not feasible, given the potential of users holding multiple Reddit accounts), the number of likely participants in the AMA far exceeds the sample size participating in any BD priority-setting or consensus building exercise to date. Online community events like these AMAs may therefore be a new avenue to gather a broad range of community perspectives to inform future priority setting and consensus building exercises. For example, a first step in Delphi study is to generate items for consensus ranking; these items are typically generated by a research team from a review of the literature, prior qualitative work, or responses from the Delphi panel to open-ended survey items in the first round of data collection. By leveraging online community events, it would be possible to generate items for inclusion based on a much larger sample than is typical for Delphi panels [38]. Further, the community-oriented, bidirectional nature of the knowledge exchange provides an extensive resource for community members who participate, as well as those who prefer to browse without directly engaging, helping to fill critical knowledge gaps affecting under-served populations.

Notably, use of online community events to help inform priority setting and consensus building addresses a recognized challenge in this area: that not all individuals are invited or able to participate in patient engagement activities. Numerous barriers to engagement persist, including transportation and inadequate time to participate [19,39], as well as personal factors such as worries about embarrassment, privacy concerns, and lack of self-confidence [19]. These barriers disproportionately impact people of marginalized backgrounds and identities [38], which is especially problematic considering these individuals may have differing, and often more negative, experiences of healthcare systems that are crucial to capture in priority-setting and consensus-building activities [19]. Challenges of living with BD may themselves impact engagement, as serious mood symptoms, comorbidities, or associated cognitive and memory difficulties may inhibit participation. Further, individuals who challenge dominant views in healthcare may be less likely to be included or listened to during priority setting studies [18,40], suggesting that perspectives that do not align with prevailing research priorities may be missed. Online events like AMAs can help address these traditional barriers to entry: they are accessible globally to anyone with internet access, they are anonymous and require no transport, and they are asynchronous and require little time commitment from participants.

Although analyses of social media data do not substitute for direct engagement with communities, analyses of such data may assist in highlighting needs and perspectives previously unrepresented in research of patient priorities. In the present study, the topics identified by BERTopic displayed several differences between the primary concerns of AMA users versus the outcome of nine earlier priority-setting and consensus-building studies in BD. For example, the most prominent topic within the AMA questions was BD misdiagnosis. This can be contrasted to previous consensus-building studies, few of which identified needs related to diagnosis, commonly focusing on issues related to treatment (e.g., medications and their side effects) instead [14,37,41–43]. This discrepancy may be due to the convenience or purposive sampling techniques employed by patient engagement projects, which may not include individuals with unclear or ambiguous diagnoses, or because participants may be uncomfortable discussing these questions if it has been established that a specific diagnosis is required for participation. Community interest in substance use was represented across several of the NLP-identified topics, with particular interest of AMA participants in the risk and benefits of often-recreationally substances like cannabis and psychedelics. Though such substances are known to be used in naturalistic settings by people living with BD [44], their therapeutic potential was not identified as a key topic in earlier consensus building studies. Such topics may be difficult to discuss in the context of traditional patient-engaged settings, where participants may lack anonymity and fear repercussions or stigmatization (especially when discussing illicit substances). Another key divergence from previous research is the prominence of caregiver concerns: in this analysis, questions about supporting loved ones was the fourth most discussed topic, yet only one previous consensus building study focused on the information needs of caregivers [45]. This underlines another strength of the online community event approach: because participation is open to any users, populations who are typically not considered by researchers may access the event and partake, as opposed to conventional approaches where the population of interest must be specified a priori. We also observed concordance between some topics of prior priority setting studies and the AMA topics of interest, such as sleep, pharmacological management of BD, and lifestyle influences and effective coping studies. Altogether, the NLP analysis identified several topics undiscussed in previous research seeking to identify priorities of patients with BD, highlighting a need to more carefully attend to issues of diversity and retention (as discussed by O’Donnell et al.) [14] to broaden the relevance of consensus building research.

Conclusion

Our results indicate that Reddit is a valuable and largely untapped resource for health researchers, and presents an opportunity for bidirectional knowledge generation and exchange between researchers and users. AMAs may be a new avenue for informing priority setting and consensus building exercises that engage a much larger sample of patients than is possible in real-world settings. Our analysis identified several more novel community priorities, including information on misdiagnosis and differential diagnosis; research into new pharmacological approaches, notably use of historically recreational drugs such as cannabis and psilocybin; studies examining diet and BD, especially the ketogenic diet; research into cyclothymia; and a need for knowledge and resources to support loved ones with BD. There was also concordance with previous priority-setting exercise in areas like information on sleep and BD, including effects of circadian rhythm disruptors like artificial light; methods for day-to-day coping; and a notable expressed need for information about pharmaceutical medications, such as appropriate dosage or usage when pregnant. Future research into these lived experience-informed priority areas holds potential to enhance the quality of care and clinical management of BD.

Supporting information

Acknowledgments

We would like to thank the Reddit users who have participated in this event over the past five years for sharing their questions and making this research possible. We would also like to thank the panelists who have contributed their time and expertise to the AMA over the past five years. The group CREST.BD is led by author Erin E. Michalak (erin.michalak@ubc.ca), and includes individual authors Caden Poh, John-Jose Nunez, Laura Lapadat, and Emma Morton. A full list of network members can be found at https://www.crestbd.ca/about/team.