Depression Detectives: A methodology for online co-created research

Depression Detectives: A methodology for online co-created research | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Depression Detectives: A methodology for online co-created research Sophia Collins, Christine Kupfer, Stephanie Organ, Melissa Lewins, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7661516/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 11 You are reading this latest preprint version Abstract Background: Incorporating lived experiences into research is claimed to enhance depth, relevance, real-world applicability and equity. However, data scientists have been slower to adopt this approach than other health fields. The "Depression Detectives" (DD) project aimed to bridge this gap by connecting Big Data researchers with individuals who have lived experience of depression. Depression is both a significant global health issue and a deeply personal experience. Feelings of isolation often drive people to seek information and support online, making this project’s digital presence particularly relevant. Methods: Building on research methods developed in Parenting Science Gang, we conducted a co-creation project within a private Facebook group from February to September 2021. Seventy individuals with depression and thirty data science researchers participated in discussions and chose a research question. Together, they designed and implemented a survey and focus group discussions exploring health-seeking behaviours and under-reporting of depressive episodes to GPs. Concurrently, a PhD student analysed UK Biobank data for discrepancies in depression reporting. Results: In the UK Biobank, 67% of individuals whose questionnaire responses indicated depression had no GP record of it. Similarly, 84% of DD participants reported visiting their GP for half or fewer of their depressive episodes. Key barriers included stigma, dissatisfaction with healthcare, and a preference for non-medical interventions such as private counselling, mindfulness, and exercise. These alternatives were perceived as addressing the root causes of depression. Participants described the research process as rewarding and empowering, noting it broadened their understanding both of depression and their own experiences. Researchers valued the insights gained, but found the process demanding. Conclusions: This project demonstrates the value of incorporating lived experiences into mental health research through co-creation. Lived experience participants contributed unique perspectives that differed from those of university researchers. By combining these insights with big data analysis, the project generated findings that better reflect real-life experiences, enhancing their applicability to personalised mental health care. Participants found the process to be 'quasi-therapeutic’ and advocated for healthcare systems to adopt diverse, holistic treatments for depression. These findings support inclusive policy development and underscore the importance of epistemic justice and democrative knowledge production. Depression Co-creation Citizen Science General Practitioners Data Science Big Data Patient Involvement Mental Health Co-production Patient and Public Involvement Full Text Additional Declarations No competing interests reported. Supplementary Files AdditionalInformation1.pdf Additionalinformation2.pdf Gripp2Checklist.docx Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 11 Jan, 2026 Reviews received at journal 08 Jan, 2026 Reviewers agreed at journal 03 Dec, 2025 Reviews received at journal 26 Nov, 2025 Reviews received at journal 21 Nov, 2025 Reviewers agreed at journal 15 Oct, 2025 Reviewers agreed at journal 13 Oct, 2025 Reviewers invited by journal 13 Oct, 2025 Editor assigned by journal 25 Sep, 2025 Submission checks completed at journal 23 Sep, 2025 First submitted to journal 19 Sep, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7661516","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":534077283,"identity":"adb88aa6-24d2-48e2-b4a8-36190b93cb99","order_by":0,"name":"Sophia Collins","email":"","orcid":"","institution":"Science is People Ltd","correspondingAuthor":false,"prefix":"","firstName":"Sophia","middleName":"","lastName":"Collins","suffix":""},{"id":534077284,"identity":"4200debe-2db2-4321-a1c0-ec5795a7ecbc","order_by":1,"name":"Christine Kupfer","email":"","orcid":"","institution":"No institution at time of project. 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Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Depression, Co-creation, Citizen Science, General Practitioners, Data Science, Big Data, Patient Involvement, Mental Health, Co-production, Patient and Public Involvement","lastPublishedDoi":"10.21203/rs.3.rs-7661516/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7661516/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Incorporating lived experiences into research is claimed to enhance depth, relevance, real-world applicability and equity. However, data scientists have been slower to adopt this approach than other health fields. The \"Depression Detectives\" (DD) project aimed to bridge this gap by connecting Big Data researchers with individuals who have lived experience of depression. Depression is both a significant global health issue and a deeply personal experience. Feelings of isolation often drive people to seek information and support online, making this project’s digital presence particularly relevant.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e Building on research methods developed in Parenting Science Gang, we conducted a co-creation project within a private Facebook group from February to September 2021. Seventy individuals with depression and thirty data science researchers participated in discussions and chose a research question. Together, they designed and implemented a survey and focus group discussions exploring health-seeking behaviours and under-reporting of depressive episodes to GPs. Concurrently, a PhD student analysed UK Biobank data for discrepancies in depression reporting.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e In the UK Biobank, 67% of individuals whose questionnaire responses indicated depression had no GP record of it. Similarly, 84% of DD participants reported visiting their GP for half or fewer of their depressive episodes. Key barriers included stigma, dissatisfaction with healthcare, and a preference for non-medical interventions such as private counselling, mindfulness, and exercise. These alternatives were perceived as addressing the root causes of depression.\u003c/p\u003e\n\u003cp\u003eParticipants described the research process as rewarding and empowering, noting it broadened their understanding both of depression and their own experiences. Researchers valued the insights gained, but found the process demanding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e This project demonstrates the value of incorporating lived experiences into mental health research through co-creation. Lived experience participants contributed unique perspectives that differed from those of university researchers. By combining these insights with big data analysis, the project generated findings that better reflect real-life experiences, enhancing their applicability to personalised mental health care.\u003c/p\u003e\n\u003cp\u003eParticipants found the process to be 'quasi-therapeutic’ and advocated for healthcare systems to adopt diverse, holistic treatments for depression. These findings support inclusive policy development and underscore the importance of epistemic justice and democrative knowledge production.\u003c/p\u003e","manuscriptTitle":"Depression Detectives: A methodology for online co-created research","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-27 16:45:02","doi":"10.21203/rs.3.rs-7661516/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-01-11T12:54:46+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-01-08T13:22:25+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"334209542530694870400594240517468466304","date":"2025-12-03T19:33:45+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-26T21:52:04+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-21T20:10:25+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"133895873743963585385548564038544627954","date":"2025-10-15T16:28:56+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"122191328468835944768827864613409779707","date":"2025-10-13T16:46:31+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-13T15:54:47+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-25T12:12:54+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-23T04:25:30+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2025-09-19T23:59:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a92dc7ac-4d82-4d1d-9583-b7812e7ec241","owner":[],"postedDate":"October 27th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-19T09:08:33+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-27 16:45:02","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7661516","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7661516","identity":"rs-7661516","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}