{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T03:03:05Z","timestamp":1787022185471,"version":"build-2736575974"},"reference-count":49,"publisher":"Public Library of Science (PLoS)","issue":"3","license":[{"start":{"date-parts":[[2026,3,6]],"date-time":"2026-03-06T00:00:00Z","timestamp":1772755200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Otsuka-Lundbeck"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:p>Bipolar disorder (BD) is a prevalent mood disorder that can be associated with serious personal, societal, and economic costs. Growing attention is being paid to the importance of including the experiences of people living with BD in research and healthcare system advancement. However, there is still much to be learned about what people with BD are prioritizing, and where their needs are not yet being met in research and clinical settings. For the past five years, the Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD) has facilitated the world\u2019s largest online BD question-and-answer event, an \u201cAsk Me Anything\u201d (AMA) hosted via Reddit. This event allows people internationally to submit BD-related questions to be answered by expert panelists. Altogether, 159 panelists with diverse expertise in BD have participated, and more than 2,000 questions addressed. After five years, the Reddit AMAs have become a large repository of questions that represent the needs and interests of individuals with BD and their supporters. This study used topic modeling, a natural language processing (NLP) method, to algorithmically extract key topics from AMA queries collected over five years. Queries were extracted using a python script and the Reddit API; BERTopic was used for topic modelling. Topic models of 10, 20, and an unrestricted number of topics were run; the 20 topic model was chosen as it best balanced specificity and breadth. The most common topic was BD misdiagnosis\/differential diagnoses. Other topics included coping with daily struggles; understanding hypomania and suicidality; medication and use of substances such as psilocybin and ketamine; and supporting loved ones with BD. Future research in these areas would be beneficial for individuals with BD and their loved ones, and patients with BD may benefit from clinicians addressing these topics. Ethical issues are also discussed.<\/jats:p>","DOI":"10.1371\/journal.pone.0338622","type":"journal-article","created":{"date-parts":[[2026,3,6]],"date-time":"2026-03-06T18:35:31Z","timestamp":1772822131000},"page":"e0338622","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":2,"title":["5 Years of bipolar disorder conversations on Reddit: Methods, key topics and future directions"],"prefix":"10.1371","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0810-3664","authenticated-orcid":true,"given":"Caden","family":"Poh","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9527-1337","authenticated-orcid":true,"given":"Cheyanne","family":"Head","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1602-6382","authenticated-orcid":true,"given":"John-Jose","family":"Nunez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Lapadat","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"Morton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Collaborative RESearch Team to Study Psychosocial Issues in Bipolar Disorder (CREST.BD)","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin E.","family":"Michalak","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,3,6]]},"reference":[{"issue":"2","key":"pone.0338622.ref001","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1590\/1516-4446-2012-1693","article-title":"Bipolar disorder prevalence: a systematic review and meta-analysis of the literature","volume":"37","author":"AS Clemente","year":"2015","journal-title":"Braz J Psychiatry."},{"key":"pone.0338622.ref002","unstructured":"American P, Association. Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed. Washington, D.C.: American Psychiatric Association; 2013."},{"key":"pone.0338622.ref003","unstructured":"World Health Organization. World Report on Disability. 2011. https:\/\/www.who.int\/teams\/noncommunicable-diseases\/sensory-functions-disability-and-rehabilitation\/world-report-on-disability"},{"key":"pone.0338622.ref004","unstructured":"Bipolar UK. Bipolar mind matter: quicker diagnosis and specialist support for everyone with bipolar. 2022. https:\/\/www.bipolaruk.org\/bipolar-commission-findings"},{"issue":"2","key":"pone.0338622.ref005","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0016837","article-title":"NIH disease funding levels and burden of disease","volume":"6","author":"LA Gillum","year":"2011","journal-title":"PLoS One."},{"issue":"5","key":"pone.0338622.ref006","doi-asserted-by":"crossref","first-page":"637","DOI":"10.1111\/j.1369-7625.2012.00795.x","article-title":"Mapping the impact of patient and public involvement on health and social care research: a systematic review","volume":"17","author":"J Brett","year":"2014","journal-title":"Health Expect."},{"key":"pone.0338622.ref007","doi-asserted-by":"crossref","first-page":"89","DOI":"10.1186\/1472-6963-14-89","article-title":"Patient engagement in research: a systematic review","volume":"14","author":"JP Domecq","year":"2014","journal-title":"BMC Health Serv Res."},{"key":"pone.0338622.ref008","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1186\/s40900-015-0003-x","article-title":"Patients\u2019, clinicians\u2019 and the research communities\u2019 priorities for treatment research: there is an important mismatch","volume":"1","author":"S Crowe","year":"2015","journal-title":"Res Involv Engagem."},{"issue":"5","key":"pone.0338622.ref009","doi-asserted-by":"crossref","first-page":"520","DOI":"10.1080\/09638230701878724","article-title":"What are mental health service users\u2019 priorities for research in the UK?","volume":"17","author":"D Rose","year":"2008","journal-title":"Journal of Mental Health."},{"key":"pone.0338622.ref010","doi-asserted-by":"crossref","first-page":"200279","DOI":"10.1016\/j.mhp.2023.200279","article-title":"Priority setting in mental health research: a scoping review of participatory methods","volume":"30","author":"E G\u00fcell","year":"2023","journal-title":"Mental Health & Prevention."},{"key":"pone.0338622.ref011","doi-asserted-by":"crossref","first-page":"318","DOI":"10.1186\/1472-6963-14-318","article-title":"UK research funding bodies\u2019 views towards public participation in health-related research decisions: an exploratory study","volume":"14","author":"JE van Bekkum","year":"2014","journal-title":"BMC Health Serv Res."},{"issue":"7","key":"pone.0338622.ref012","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1111\/bioe.12591","article-title":"Engagement as co-constructing knowledge: A moral necessity in public health research","volume":"33","author":"B Pratt","year":"2019","journal-title":"Bioethics."},{"issue":"3","key":"pone.0338622.ref013","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1080\/09581596.2018.1449598","article-title":"The ethics and politics of community engagement in global health research","volume":"28","author":"L Reynolds","year":"2018","journal-title":"Critical Public Health."},{"key":"pone.0338622.ref014","unstructured":"O\u2019Donnell L, Ziegler CP, Morton E, Johal P, Mauer-Vakil D, Banner-Lukaris D. Consensus building in bipolar disorder: a scoping review protocol of consensus methods. 2023. https:\/\/doi.org\/10.17605\/OSF.IO\/XKMNQ"},{"key":"pone.0338622.ref015","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1016\/j.jad.2016.06.057","article-title":"Effective self-management strategies for bipolar disorder: a community-engaged Delphi Consensus Consultation study","volume":"206","author":"EE Michalak","year":"2016","journal-title":"Journal of Affective Disorders."},{"issue":"2","key":"pone.0338622.ref016","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1016\/j.socscimed.2012.02.056","article-title":"Patients\u2019 willingness and ability to participate actively in the reduction of clinical errors: A systematic literature review","volume":"75","author":"C Doherty","year":"2012","journal-title":"Social Science & Medicine."},{"key":"pone.0338622.ref017","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1016\/j.socscimed.2018.07.019","article-title":"Community participation in general health initiatives in high and upper-middle income countries: a systematic review exploring the nature of participation, use of theories, contextual drivers and power relations in community participation","volume":"213","author":"FL Hoon Chuah","year":"2018","journal-title":"Soc Sci Med."},{"issue":"7","key":"pone.0338622.ref018","doi-asserted-by":"crossref","DOI":"10.1097\/MD.0000000000032829","article-title":"Use of Delphi in health sciences research: a narrative review","volume":"102","author":"Z Shang","year":"2023","journal-title":"Medicine (Baltimore)."},{"issue":"1","key":"pone.0338622.ref019","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1186\/s12961-020-00644-3","article-title":"Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews","volume":"19","author":"J Ocloo","year":"2021","journal-title":"Health Res Policy Syst."},{"issue":"2","key":"pone.0338622.ref020","doi-asserted-by":"crossref","first-page":"20563051211019004","DOI":"10.1177\/20563051211019004","article-title":"Studying Reddit: a systematic overview of disciplines, approaches, methods, and ethics","volume":"7","author":"N Proferes","year":"2021","journal-title":"Social Media + Society."},{"key":"pone.0338622.ref021","first-page":"1362","article-title":"Tracking health related discussions on reddit for public health applications","volume":"2017","author":"A Park","year":"2018","journal-title":"AMIA Annu Symp Proc."},{"issue":"1","key":"pone.0338622.ref022","doi-asserted-by":"crossref","first-page":"71","DOI":"10.1609\/icwsm.v8i1.14526","article-title":"Mental health discourse on reddit: self-disclosure, social support, and anonymity","volume":"8","author":"M De Choudhury","year":"2014","journal-title":"ICWSM."},{"key":"pone.0338622.ref023","doi-asserted-by":"crossref","first-page":"1243407","DOI":"10.3389\/frma.2023.1243407","article-title":"Identifying mental health discussion topic in social media community: subreddit of bipolar disorder analysis","volume":"8","author":"T Timakum","year":"2023","journal-title":"Front Res Metr Anal."},{"issue":"4","key":"pone.0338622.ref024","doi-asserted-by":"crossref","first-page":"1565","DOI":"10.1016\/j.ipm.2018.10.001","article-title":"Semantic network analysis for understanding user experiences of bipolar and depressive disorders on Reddit","volume":"56","author":"M Yoo","year":"2019","journal-title":"Information Processing & Management."},{"key":"pone.0338622.ref025","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1016\/j.copsyc.2016.01.004","article-title":"Social media, big data, and mental health: current advances and ethical implications","volume":"9","author":"M Conway","year":"2016","journal-title":"Curr Opin Psychol."},{"issue":"1","key":"pone.0338622.ref026","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1186\/s40345-016-0045-5","article-title":"Harnessing the potential of community-based participatory research approaches in bipolar disorder","volume":"4","author":"EE Michalak","year":"2016","journal-title":"Int J Bipolar Disord."},{"key":"pone.0338622.ref027","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1145\/3633070","article-title":"Remember the human: a systematic review of ethical considerations in reddit research","volume":"8","author":"C Fiesler","year":"2024","journal-title":"Proc ACM Hum-Comput Interact."},{"key":"pone.0338622.ref028","unstructured":"McClain C, Faverio M, Anderson M, Park E. How Americans view data privacy. Pew Research Center. [cited 2024 Nov 29]. https:\/\/www.pewresearch.org\/internet\/2023\/10\/18\/how-americans-view-data-privacy\/"},{"issue":"3","key":"pone.0338622.ref029","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1007\/s10676-022-09663-w","article-title":"Disguising Reddit sources and the efficacy of ethical research","volume":"24","author":"J Reagle","year":"2022","journal-title":"Ethics Inf Technol."},{"key":"pone.0338622.ref030","unstructured":"Grootendorst M. BerTopic: neural topic modeling with a class-based TF-IDF procedure. arXiv preprint 2022. https:\/\/doi.org\/10.48550\/arXiv.2203.05794"},{"issue":"1","key":"pone.0338622.ref031","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1038\/s43856-024-00495-x","article-title":"Predicting which patients with cancer will see a psychiatrist or counsellor from their initial oncology consultation document using natural language processing","volume":"4","author":"J-J Nunez","year":"2024","journal-title":"Commun Med (Lond)."},{"key":"pone.0338622.ref032","first-page":"1","article-title":"Public sentiment on the global outbreak of monkeypox: an unsupervised machine learning analysis of 352,182 twitter posts","volume":"213","author":"QX Ng","year":"2022","journal-title":"Public Health."},{"key":"pone.0338622.ref033","doi-asserted-by":"crossref","first-page":"122130","DOI":"10.1016\/j.techfore.2022.122130","article-title":"Exploring new digital therapeutics technologies for psychiatric disorders using BERTopic and PatentSBERTa","volume":"186","author":"E Jeon","year":"2023","journal-title":"Technological Forecasting and Social Change."},{"key":"pone.0338622.ref034","unstructured":"McInnes L, Healy J, Melville J. UMAP: uniform manifold approximation and projection for dimension reduction. 2020. https:\/\/doi.org\/10.48550\/arXiv.1802.03426"},{"issue":"11","key":"pone.0338622.ref035","doi-asserted-by":"crossref","first-page":"205","DOI":"10.21105\/joss.00205","article-title":"hdbscan: hierarchical density based clustering","volume":"2","author":"L McInnes","year":"2017","journal-title":"JOSS."},{"key":"pone.0338622.ref036","unstructured":"Jurafsky D, Martin J. Speech and language processing. 2nd ed. Upper Saddle River, NJ, USA: Prentice Hall; 2009."},{"issue":"12","key":"pone.0338622.ref037","doi-asserted-by":"crossref","first-page":"1078","DOI":"10.3109\/00048674.2011.624084","article-title":"SCOPE for Research: mental health consumers\u2019 priorities for research compared with recent research in Australia","volume":"45","author":"MA Banfield","year":"2011","journal-title":"Aust N Z J Psychiatry."},{"key":"pone.0338622.ref038","doi-asserted-by":"crossref","first-page":"457","DOI":"10.3389\/fpubh.2020.00457","article-title":"Delphi technique in health sciences: a map","volume":"8","author":"M Niederberger","year":"2020","journal-title":"Front Public Health."},{"issue":"1","key":"pone.0338622.ref039","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1111\/hex.12597","article-title":"Black and minority ethnic group involvement in health and social care research: a systematic review","volume":"21","author":"S Dawson","year":"2018","journal-title":"Health Expect."},{"issue":"8","key":"pone.0338622.ref040","doi-asserted-by":"crossref","first-page":"626","DOI":"10.1136\/bmjqs-2015-004839","article-title":"From tokenism to empowerment: progressing patient and public involvement in healthcare improvement","volume":"25","author":"J Ocloo","year":"2016","journal-title":"BMJ Qual Saf."},{"issue":"10","key":"pone.0338622.ref041","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0240518","article-title":"Development of a core outcome set for use in community-based bipolar trials-A qualitative study and modified Delphi","volume":"15","author":"A Retzer","year":"2020","journal-title":"PLoS One."},{"key":"pone.0338622.ref042","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1016\/j.jad.2018.05.061","article-title":"A research agenda for bipolar disorder developed from a patients\u2019 perspective","volume":"239","author":"EF Maassen","year":"2018","journal-title":"J Affect Disord."},{"issue":"8","key":"pone.0338622.ref043","doi-asserted-by":"crossref","first-page":"676","DOI":"10.1111\/bdi.12547","article-title":"Systemic challenges in bipolar disorder management: A patient-centered approach","volume":"19","author":"A Nestsiarovich","year":"2017","journal-title":"Bipolar Disord."},{"issue":"1","key":"pone.0338622.ref044","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1177\/02698811221131997","article-title":"Risks and benefits of psilocybin use in people with bipolar disorder: an international web-based survey on experiences of \u2018magic mushroom\u2019 consumption","volume":"37","author":"E Morton","year":"2022","journal-title":"J Psychopharmacol."},{"key":"pone.0338622.ref045","doi-asserted-by":"crossref","first-page":"556","DOI":"10.1111\/j.1399-5618.2011.00942.x","article-title":"Development of guidelines for caregivers of people with bipolar disorder: a Delphi expert consensus study","volume":"13","author":"L Berk","year":"2011","journal-title":"Bipolar Disord."},{"key":"pone.0338622.ref046","doi-asserted-by":"crossref","first-page":"40","DOI":"10.1177\/1556264619850736","article-title":"What Is \u201cPublicly Available Data\u201d? Exploring Blurred Public-Private Boundaries and Ethical Practices Through a Case Study on Instagram","volume":"15","author":"S Ravn","year":"2020","journal-title":"J Empir Res Hum Res Ethics."},{"key":"pone.0338622.ref047","unstructured":"Global: Reddit users 2019-2028. Statista. [cited 2025 Mar 6]. https:\/\/www.statista.com\/forecasts\/1143622\/reddit-users-in-the-world"},{"key":"pone.0338622.ref048","unstructured":"flignir. Subscriber survey data dump!. r\/AmItheAsshole. 2019. http:\/\/www.reddit.com\/r\/AmItheAsshole\/comments\/dcae07\/2019_subscriber_survey_data_dump\/"},{"key":"pone.0338622.ref049","unstructured":"Nunez JJ. World Bipolar Day AMA BERTopic: v1.0.0 Version used in Paper. Zenodo. 2025."}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0338622","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,6]],"date-time":"2026-03-06T18:35:39Z","timestamp":1772822139000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0338622"}},"subtitle":[],"editor":[{"given":"Souparno","family":"Mitra","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,3,6]]},"references-count":49,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2026,3,6]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0338622","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,6]]}}}