Category: Imported News

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Detection of Self-Harm in Electronic Mental Health Records Using Privacy-Preserving Local Language Models: Methodological Study

Background: Self-harm is the strongest risk factor for suicide and an important outcome for mental health care. Although prevalent in clinical populations, it is often imprecisely captured in routinely collected clinical data, where it is often recorded and stored as unstructured free text. Contemporary language models, such as GPT (OpenAI) and Gemini (Google), can analyze free-text clinical notes, but such models may violate data governance of processing sensitive patient data. Objective: This study aimed to evaluate whether a privacy-preserving language model running entirely within an institution’s secure computing infrastructure (here, the UK National Health Service [NHS]) could accurately identify the presence and timing of self-harm using electronic health records from secondary mental health care. Methods: Clinical notes were drawn from Oxford Health NHS Foundation Trust using a multistage workflow: (1) a random sample of 1000 patients with a psychiatric diagnosis, defined according to the (; codes F00–F99); (2) candidate-note identification using a Gemma3-4b language model to flag notes containing self-harm content; and (3) from those candidates, 1352 randomly sampled notes were selected for expert annotation, resulting in gold-standard corpus enriched for self-harm content. Clinical notes were annotated for the presence of self-harm and its timing (≤90 days, >90 days, or unknown). A privacy-preserving locally served 27-billion-parameter Gemma 3 language model (“Gemma3-27b”) was used as the core model. Prompts were systematically developed and refined using a labeled development set to identify self-harm and generate a structured output per clinical record. Gemma3-27b performance was compared against a strong baseline multilabel text classification model based on robustly optimized BERT pretraining approach (RoBERTa), a transformer-based language model architecture. Model performance was evaluated using precision, recall, and the -score (harmonic mean of precision and recall), with 95% CIs estimated from 1000 bootstrap samples with replacement. Results: Gemma3-27b outperformed the RoBERTa classifier across all categories, achieving Precision=0.92, Recall=0.92 (sensitivity), and -score=0.92 for notes containing self-harm, and Precision=0.97, Recall=0.97 (specificity), and -score=0.97 for notes without self-harm. For the 51 notes labeled as recent self-harm in the held-out test set, Gemma3-27b achieved Precision=0.84, Recall=0.75, and -score=0.79. The global weighted -score of Gemma3-27b across all categories was 0.88, compared to 0.85 for RoBERTa. Conclusions: With systematic prompt development on a labeled development set, but no gradient-based fine-tuning, the current Gemma3-27b language model matched or exceeded a fine-tuned RoBERTa classifier for ascertaining self-harm events and their timing. Aggregate gains were modest, while improvements were largest in the most challenging, lower-frequency timing categories. On a simplified binary recent-versus-other task, RoBERTa performed marginally better, indicating that supervised classifiers remain highly effective when the task is simplified and sufficient labeled data exist. This work demonstrates the technical feasibility of privacy-preserving self-harm detection within a secure NHS research environment.
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Recommendations for Research and Clinical Implementation of Ambulatory Assessment, Mood Monitoring, Digital Phenotyping, and Remote Measurement Technology in Mood Disorders: Synthesis of Systematic Review Findings

Background: Ambulatory assessment and active and passive monitoring all offer a real-time, flexible approach to assessing mood and behavior in mood disorders. Despite their potential, concerns remain regarding the performance, usability, adherence, and potential safety of these tools. Objective: This study synthesizes the findings from 7 systematic reviews, integrating quantitative and qualitative data from randomized trials, observational studies, and user experience research to evaluate the performance, feasibility, acceptability, and clinical impact of ambulatory assessment and mood monitoring in people with depression and bipolar disorder. We assessed studies over the medium or long term (3 months or more). Methods: A summary of a series of systematic reviews was carried out by the authors—including meta-analyses (for quantitative data) and meta-syntheses (for qualitative data). Eight electronic databases were searched, and mixed methods studies were included. Studies were assessed for risk of bias. The results were checked for coherence, and recommendations were made by individuals with lived experience, methodologists, and psychiatrists. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) was used to assess the quality and strength of the evidence. Results: The 111 included studies included 19,945 participants and used 69 different ambulatory assessment protocols or mood-monitoring interventions. Key barriers to implementation were identified, including performance inconsistency, adverse effects, and user disengagement. Evidence-based recommendations are provided to guide future clinical and research applications. Conclusions: Ambulatory assessment and mood monitoring hold promise in research and clinical practice, yet their implementation requires more rigorous evaluation, greater personalization, and responsible, user-centered design. Crucially, these measures can add granularity and confirmation, but additional context is often required, and none of these measures are robust enough yet to replace current outcomes.
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Eye-Tracking Technologies for Cognitive Assessment After Acquired Brain Injury: Systematic Review

Background: Acquired brain injury (ABI) is a heterogeneous umbrella term encompassing traumatic and nontraumatic etiologies and is frequently associated with persistent cognitive dysfunction. Conventional neuropsychological assessment remains central to clinical evaluation, but feasibility and measurement precision may be limited in individuals with motor impairment, aphasia, reduced stamina, or fluctuating arousal. Eye tracking offers an objective, low-burden approach that can quantify gaze behavior during task engagement and may provide complementary process-level markers of cognition. Objective: This study aimed to systematically synthesize the evidence on eye-tracking paradigms used as a primary approach for cognitive assessment in ABI and to summarize findings by cognitive domain, paradigm, and clinical interpretability. Methods: We conducted a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020–compliant systematic review and registered the protocol in PROSPERO (CRD420251038768). PubMed, Web of Science, the Cochrane Library, Embase, EBSCOhost, PsycINFO, and Scopus were searched from inception to April 10, 2025. We included peer-reviewed English-language studies enrolling children or adults with ABI in which eye tracking was the primary assessment modality used to quantify at least one cognitive domain or clinically relevant cognitive-communication process. Two reviewers independently screened studies, extracted data, and assessed methodological quality using design-appropriate tools (Risk of Bias 2, Risk of Bias in Non-Randomized Studies of Interventions, Quality Assessment of Diagnostic Accuracy Studies 2, and the Newcastle-Ottawa Scale). A structured narrative synthesis was performed because of heterogeneity in paradigms and outcome definitions. Results: Twenty-seven studies met the inclusion criteria (N=872 participants; females: n=354 and males: n=518), with most evidence derived from mild traumatic brain injury cohorts, and fewer studies involving stroke, mixed etiologies, and disorders of consciousness. Across domains, antisaccade and related paradigms were commonly associated with differences in inhibitory control and executive function, while predictive tracking, smooth pursuit, and target-blanking paradigms frequently captured alterations in attentional prediction and timing. Virtual reality (VR) free-viewing paradigms identified visuospatial exploration asymmetries in stroke-related neglect, and gaze-based human-computer interface approaches demonstrated above-chance task performance in a subset of patients with disorders of consciousness. Evidence for incremental validity beyond conventional assessment was mixed and often indirect, and safety reporting was uncommon. Overall certainty of evidence was generally low and limited by small sample sizes, cross-sectional designs, and heterogeneity in acquisition procedures, metrics, and analytic pipelines. Conclusions: Eye tracking shows potential as an adjunctive, process-level approach for quantifying specific cognition-relevant behaviors after ABI, particularly within paradigms targeting inhibitory control and predictive attention. Current evidence is insufficient to support broad diagnostic claims or the routine replacement of conventional neuropsychological assessment. Future research should prioritize harmonized paradigms and reporting standards, external validation of classification models, longitudinal designs, and explicit feasibility and safety reporting to clarify when eye tracking provides incremental clinical value for precision neurorehabilitation.
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Mental Health Fitness Through a Youth Perspective 

Insights on building and advancing mental health care solutions through collaboration — from the Global Youth Advisory Council at the SNF Global Center for Child and Adolescent Mental Health at the Child Mind Institute

Mai El Shoush, Partnerships Campaign Manager, Stavros Niarchos Foundation (SNF) Global Center for Child and Adolescent Mental Health at the Child Mind Institute

Tatiana P. Claridad, MBA, Director of Board Affairs and Institutional Strategy, Stavros Niarchos Foundation (SNF) Global Center for Child and Adolescent Mental Health at the Child Mind Institute

Mental health fitness is shaped by lived experience, context, and the systems of care that surround us. During Mental Health Awareness Month, we invited young leaders from the Global Youth Advisory Council (GYAC) at the Stavros Niarchos Foundation (SNF) Global Center at the Child Mind Institute — from Brazil, South Africa, and Greece — to share their unique perspectives.

Their reflections offer insight into how young people define, build, and experience mental fitness globally, highlighting the influence of their environments, communities and everyday realities. Their views are essential to shaping more relevant and effective support for young people everywhere.

From left to right: Delice Lumbu, Mariana Rodrigues Chaves, Spyros Chronis, Faidra Kamperidi, Kayla Coetzer, Denny Oliveira Curini, Jennifer Matibi

From daily habits to systemic change, here’s how young people are reimagining mental health care as mental health fitness:

“By cultivating a practice of self-awareness — through understanding myself and my internal needs better, I’m able to show up for myself in the ways that I need in those moments of struggle.”

Kayla Coetzer, 24, South Africa

“In this fast-paced world, it’s important to take a step back, disconnect from the digital world, and engage with friends…try helping others and don’t be afraid to ask for help if needed.”

Spyros Chronis, 20, Greece

“I honor my journey by normalizing help‑seeking and reminding myself that mental health is an ongoing process that requires care, patience, and the courage to choose growth, even in environments where it is not always encouraged.”

Jennifer Matibi, 24, South Africa

“For me, keeping my mental health fit is about understanding and embracing my talents and weaknesses, and dedicating time to spaces that value my uniqueness.”

Mariana Rodrigues Chaves, 18, Brazil

“I try to find ways to ground myself and do things that people my age typically do. Making mistakes is acceptable and often necessary for personal growth.”

Faidra Kamperidi, 19, Greece

“Young people can build mental health fitness in their everyday lives through self-care, doing things that energize and restore them, practicing self-compassion, and surrounding themselves with supportive people. It’s about creating small, consistent habits that allow you to show up for yourself, even on hard days.”

Delice Lumbu, 20, Director of Youth Engagement, SNF Global Center

These reflections raise a broader question — how can global collaboration strengthen mental health support for children and adolescents?

“Global collaboration in youth mental health means real change to me. When countries unite around one shared goal — safeguarding young people’s mental health — they’re investing in their own future.”

Denny Oliveira Curini, 17, Brazil

“Mental health challenges are deeply influenced by social, economic, and cultural conditions, and real growth happens when solutions are shaped within those contexts. Global collaboration creates opportunities to share lived experiences, exchange practical knowledge, and adapt tools that are both relevant and accessible. It allows us to learn from one another across borders while empowering communities with skills, resources, and frameworks that support mental growth. From my experience, collaboration is not about imposing solutions, but about co‑creating safe, healthy spaces that enable young people to build resilience, develop agency, and flourish even in environments where those opportunities are often limited.”

Jennifer Matibi, 24, South Africa

“To me, global collaboration in youth mental health represents a shift from pockets of innovation to a ‘culture of quality’ that doesn’t stop at a country’s border. It’s the recognition that while mental health struggles are a rising universal problem, the solutions are often trapped in local silos or limited by a country’s wealth. Therefore, global partnership is the bridge that allows solutions to be shaped, shared, adapted, and standardized to ensure that no one is left behind.”

Spyros Chronis, 20, Greece

“Global collaboration in youth mental health means bringing different regions’ perspectives [together] to debate and understand our similarities and differences, to then work on solutions that cross borders and change lives.”

Mariana Rodrigues Chaves, 18, Brazil

“Nowadays, young people tend to feel overwhelmed by the excessive pace of technological evolution. The constant stimuli and the pervasive flow of information put us in a position where we constantly compare ourselves to others, feeling that our efforts are never enough compared to what we see online. Together, let’s set a human example: Progress can be gradual, and it is perfectly okay to feel like you are falling behind.”

Faidra Kamperidi, 19, Greece

“Global collaboration in youth mental health means looking at shared challenges and pooling resources to tackle them together, while keeping cultural uniqueness at the forefront of country-specific solutions and care.”

Kayla Coetzer, 24, South Africa

While these insights from the GYAC members highlight the importance of collaboration, they also reflect a new paradigm of youth leadership.

What continues to inspire you as a young leader about the ideas and perspectives shared through the Global Youth Advisory Council, and what does it say about the future of mental health care?

“What continues to inspire me most is the diversity of perspectives across different countries, yet the shared commitment to improving youth mental health. There is something powerful about young people coming together across contexts, bridging gaps through a global lens while staying rooted in their lived experiences. It reminds me that the future of mental health care will be more inclusive, shaped by real voices, and focused on breaking stigma in ways that feel authentic and meaningful.”

Delice Lumbu, 20, Director of Youth Engagement, SNF Global Center

Contributors: Delice Lumbu, Director of Youth Engagement, Stavros Niarchos Foundation (SNF) Global Center for Child and Adolescent Mental Health at the Child Mind Institute

The post Mental Health Fitness Through a Youth Perspective  appeared first on Child Mind Institute.

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Asynchronous Broadcasting of Audiovisual Content as a Telerehabilitation Strategy for Patients in Rural Areas: Development and Usability Study

Background: Geographical and economic barriers limit access to health care services in rural regions of Colombia. In San Vicente del Caguán, the lack of infrastructure and rehabilitation professionals forces patients to travel long distances. Asynchronous telerehabilitation using video broadcasting is a viable strategy to address these challenges. Objective: This study aims to design and validate a telerehabilitation model using asynchronous audiovisual content broadcasting for rural patients, evaluating functionality, usability, and clinical effectiveness. Methods: A 4-stage case study developed and validated the model in San Vicente del Caguán: (1) analysis of telemedicine experiences and video-based therapy; (2) solution design including telecommunications infrastructure (radio links and Wi-Fi), mobile app (HSRehabiAPP), and web platform (HSRehabiWEB); (3) fieldwork with 7 patients receiving physical, occupational, or speech therapy, evaluating functionality (11 criteria), usability (8 criteria), and content quality (5 criteria); and (4) results analysis. The infrastructure connected San Rafael Hospital with remote centers in Los Pozos and Tres Esquinas. Participants (aged 7-68 years) from urban and rural areas had conditions including stroke, shoulder injuries, knee pathologies, hypertension, and attention-deficit hyperactivity disorder. Results: All 7 patients achieved 100% compliance across functional, usability, and audiovisual content criteria. Functional evaluation covered login, navigation, therapy access, session viewing, exercise execution, pain assessment, therapist communication, and satisfaction surveys. Usability assessment evaluated initial access, content location, navigation comfort, instructional guidance, session organization, video playback, instruction clarity, and interface intuitiveness. Content criteria included exercise clarity, step-by-step instructions, visual quality, audio quality, and correct posture demonstration. Patients reported high satisfaction, noting reduced travel costs and time, family convenience, and effective outcomes. Offline functionality proved essential in areas with limited internet connectivity. Conclusions: The asynchronous audiovisual telerehabilitation model is an effective solution for improving access to rehabilitation services in rural areas. It successfully addressed geographical barriers and infrastructure limitations while maintaining clinical effectiveness across therapies. Implementation requires adequate technological infrastructure, user-friendly platforms with offline capabilities, and quality therapeutic content. Future work demands inclusive health policies, professional training, and research with larger sample sizes to assess long-term sustainability in diverse rural contexts.
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Negative Online Experiences Are Common but Often Go Unreported Among Youth With Mental Health and Neurodevelopmental Concerns

New Child Mind Institute study finds more than one in four youth experienced a negative online experience in the past year, yet only one in five reported the incident through platform tools.

New York, NY — A new study from researchers at the Child Mind Institute finds that negative online experiences are common among children and adolescents with mental health and neurodevelopmental conditions, and that most incidents are not reported through platform reporting tools.

Published in JAACAP Open, the study examined negative online experiences among 1,009 youth ages 9 to 15 with a history of mental health or neurodevelopmental concerns, all of whom were current or previous participants in the Child Mind Institute’s Healthy Brain Network. More than one in four reported at least one negative online experience in the past year. Among those who had such an experience, nearly 69% reported multiple incidents, yet only 20% reported the incident through platform reporting tools.

The study defined “negative online experience” as any unwanted or uncomfortable experience while online, including cyberbullying, cyberstalking, doxxing, impersonation, sexual harassment, and related forms of digital harm. The research used a mixed-methods design, combining a quantitative survey with an in-depth qualitative follow-up involving a three-day moderated online bulletin board with a subset of participants.

“These findings point to a large and often hidden problem,” said Michael P. Milham, MD, PhD, Chief Science Officer at the Child Mind Institute and senior author of the study. “Many young people are encountering harmful or uncomfortable experiences online, but the systems designed to help them often do not receive a report. That creates a major gap for parents, educators, clinicians, and platforms trying to keep children safer online.”

The research team identified three major categories of barriers that prevent youth from reporting negative online experiences: reporting process barriers, such as not knowing how to make a report; reporting policy barriers, including uncertainty about what qualifies for reporting or how platform rules apply; and emotional barriers, such as embarrassment, fear, and worry about consequences.

The study also found that reporting decisions were often shaped by how young people interpreted the incident itself. In the qualitative follow-up, youth considered whether the harmful behavior seemed intentional, how malicious it appeared, and how severe or repeated the harassment was. When those cues were ambiguous, youth were less certain about whether reporting was appropriate.

“Reporting is not simply a matter of telling young people to speak up,” said Mirelle Kass, lead author of the study. “Youth are making complicated judgments about intent, severity, platform rules, and the possible consequences of disclosure. If we want young people to report harmful experiences, the tools and systems around them need to be clearer, safer, and easier to use.”

The findings suggest that online safety efforts should be tailored to the needs of youth who may already be managing mental health, developmental, or social challenges. Social aptitude, mental health symptoms, and parenting style were associated with youths’ likelihood of encountering negative online experiences and with the barriers they faced when deciding whether to report them.

Participants also expressed a clear desire for better tools and guidance. Most youth wanted platforms to provide more information about how to protect themselves online, how to use safety features such as blocking and reporting, and how to access support during and after the reporting process.

“Families, educators, clinicians, policymakers, and technology developers all have a role to play,” said Dr. Milham. “We need reporting systems that children can understand, policies that are transparent, and trusted adults who can respond without blame or overreaction. Safer digital spaces will require more than awareness. They will require systems designed around how young people actually experience online harm.”

The study underscores the importance of developmentally appropriate safety tools, clearer platform policies, and stronger support systems for youth navigating digital spaces. For children and adolescents with mental health and neurodevelopmental conditions, improving reporting pathways may be an important step toward reducing hidden online harms and building safer online environments.

This research was supported by funding from Google LLC’s User Safety team to the Child Mind Institute for work led by Michael P. Milham, MD, PhD.

About the Healthy Brain Network

The Healthy Brain Network is a community-centered research initiative from the Child Mind Institute that collects clinical, cognitive, behavioral, and neurobiological data from children and adolescents in the New York City area. Families who participate receive feedback and diagnostic consultation while contributing to open science research aimed at improving understanding of child and adolescent mental health.

About the Child Mind Institute

The Child Mind Institute is an independent nonprofit organization dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Through cutting-edge research, evidence-based clinical care, and public education, the Child Mind Institute builds open science platforms and digital tools to accelerate discovery and improve youth mental health worldwide.

For press questions, contact cmiscience@ssmandl.com or mediaoffice@childmind.org.

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Centering People, Centering Stories: Folklore as an Unlikely Ally in the OCD Misdiagnosis Crisis

By: Rebecca Bernstein, MA Folklore

The International OCD Foundation’s (IOCDF) recent landmark white paper reveals more than 80% of OCD cases in America remain undiagnosed (International OCD Foundation, 2025). Considering the size of this clinical challenge, it might seem odd to suggest that a small, humanities-based field like folklore— yes, folklore — has any role to play in the solution. As someone who studies OCD personal narratives (stories people tell about their lived experiences), my research suggests otherwise. In a situation that invokes the feeling of all-hands-on-deck, the tools and perspectives of this field may offer more benefit than we might initially give it credit for.

Folklore is the study of informal, creative communication. Dr. Lynn McNeill describes it as anything people “say, do, make, or believe” (McNeill, 2013). Folklore includes everything you’d think of (quilts, traditional music, fairy tales) and a lot of things you wouldn’t (occupational culture, gossip, internet memes.) We find examples of folklore everywhere. It’s in our holidays and our hobbies, our food and our fads, our jokes and our grieving. Folklorists study the infinite ways people express themselves in daily life. This, in turn, helps us better understand the cultural realities in which they live. And because what we “say, do, make, or believe” describes most of human behavior, the folkloric lens can be an indispensable one with which to investigate the world.

The benefit of studying how people express themselves is obvious when we recognize that in mental health, conversation and narrative are the primary tools we use to give and receive care. OCD isn’t just a diagnosis. It’s also a fundamentally creative experience. (Creative things don’t necessarily have to be beautiful, pleasing, or even wanted. They just have to be new and meaningful.) (Dictionary.com, 2023). Although ego-dystonic, extraordinary beliefs and elaborate rituals are hallmark features of OCD. When sufferers discuss their experiences, they are naturally inclined to do so through their own personal and cultural lenses. Therefore, descriptions of OCD vary infinitely. If the issue is our failure to recognize OCD when it presents itself, an approach designed to make sense of something as messy as human expression may offer insights that quantitative research methods still struggle to obtain.

How Folklorists Research

Just like in biomedical research, the research methods folklorists use matter. Our goal is to better understand people and their communities. That means we strategically build relationships, listen deeply, and intentionally embrace the complexity of those we talk to.

When I started researching OCD narratives, I wanted to know: What were the internal realities like for people who lived with this illness? What made their stories distinct? And how might those stories be connected? One of the biggest challenges I faced in my fieldwork was the potential for my participants to self-censor. As someone who also lives with OCD, I knew all too well the role shame and fear could play in the choice to fully share one’s reality with others. Using both field-tested approaches and my own lived knowledge, I conducted interviews with people with OCD, approaching them in a way I hoped would ease interviewees into difficult conversations:

  • I provided anonymity. I held all interviews on Zoom, where participants were free to keep their cameras off. I also assigned each one an alphanumeric signifier (A1, B2, etc.) in my writing.
  • I emphasized the importance of story. Although I asked specific questions, I also allowed participants to go off topic and engage in two-way conversation. The story was the point.
  • I used the “kitchen table” interview method. Based on the work of Carl Lindahl, this method tries to recreate the intimacy of two individuals talking around a kitchen table. It discourages framing the interviewer as an objective party, recognizes storytellers as experts in their own experiences, and suggests that interviewers only ask questions they themselves would be willing to answer (Lindahl, 2012).
  • I disclosed. My choice to openly discuss my own OCD diagnosis with interviewees allowed conversations to proceed with a certain warmth and vulnerability.
  • I emphasized participants’ humanity. I treated each participant as a full individual rather than just a source of information. This meant I worked on a model of enthusiastic consent. It also meant I asked them for feedback on my writing to ensure I portrayed their experiences accurately.
  • I compensated participants well. Each received a $100 gift card.

The Results

The universal theme I discovered during these interviews was a profound concern with social isolation. Every single participant mentioned this issue. Interviewees shared how OCD made it difficult for them to maintain relationships and how challenging it was to hide their illness from others. They also recalled their joy and gratitude when discussing moments in which they felt understood.

Their narratives also contained four other common themes:

1.) Logic and patterns of personal concern. Participants often discussed their particular obsessions and compulsions, and the influence those specific thoughts and behaviors had on their daily lives.

2.) Issues of negotiation. People talked about navigating certain types of conflicts as a result of their illness. These conflicts generally fell into two categories: self-negotiation and existential negotiation. In the first, people struggled with the desire to take their thoughts and urges seriously despite knowing they didn’t make sense. In the second, they wrestled with their relationships to the divine.

3.) Positive approaches to the illness. Many interviewees made a point to mention the silver linings they saw in being sick. They noted how OCD made them safer, more empathetic, or provided them with particular skills. Others discussed productive choices they’d made despite living with such a debilitating condition.

4.) Interactions with medical systems. Participants talked about their experiences as patients. For some, dealing with doctors, therapists, and other health professionals helped them understand their experience or relieved their suffering. For others, these encounters were confusing, unhelpful, or even traumatizing.

It’s important to note these themes represent a truly broad range of content. Not every story included every theme, and within those themes, the specific details I heard varied as much as the individuals themselves.

Implications

Say you were to hear four stories: one about someone’s preferred cleaning routine, one about someone’s waning belief in God, one about a good decision made in a difficult circumstance, and one about a doctor’s visit. It’s unlikely you’d consider these stories connected. And yet the data shows they are. The fact that stories with dramatically different content can reflect the same illness highlights the way OCD can remain elusive and camouflaged.

The problem with recognizing these stories as OCD stories isn’t just the variation in content. It’s also in how others hear them. In folklore, we don’t just study cultural expressions. We also study how they move from person to person. “Tellable narratives” travel easily. Both speakers and listeners understand what a certain type of story should sound like and the meaning it’s supposed to convey. If I tell you a tale about a persecuted young woman who escapes a bad home life and marries a prince, you can probably guess you’ve heard Cinderella. If we’re both excited that she went from rags to riches, we share an understanding that her journey is a positive one. In contrast, an “untellable narrative” hits some kind of barrier. If you’ve never heard Cinderella before or think the stepmother is actually the hero, my meaning in telling you the story gets lost. Untellable narratives can be misinterpreted.

This misalignment between the stories people tell and the ones listeners expect to hear happens all the time. We’ve all said things misunderstood by others. Sometimes this process is harmless; other times it results in difficult consequences. Dr. Kristiana Willsey writes about veterans who censor themselves in front of civilian audiences. Because civilians usually only expect to hear tales of “war heroes” or “PTSD survivors,” veterans often choose not to tell the full and complicated stories of their service experiences (Willsey, 2015). Dr. Amy Shuman and Carol Bohmer discuss the case of rejected asylum seekers. If asylum applicants don’t tell their stories of oppression and escape in a way that fits immigration officials’ expectations of what a traumatic asylum story should look like, their applications get denied (Shuman & Bohmer, 2016). If we consider just how different any two OCD stories can be and add the public assumption that OCD is an illness of specific doings (hand washing, checking locks) rather than tellings, it highlights just how difficult it is for most of these narratives to get heard, and heard correctly.

Patient/practitioner interactions can be particularly vulnerable to this type of miscommunication. The problem with considering OCD as just a medical issue is that most people don’t think of their lives as medical events. Practitioners enter the room ready to make sense of problems in clinical terms. Patients enter with stories. They share their concerns in a way that cannot be easily separated from their personal frames of reference or cultural understandings of life. Practitioners are often taught to mistrust the details that emerge from these narratives, to kindly but efficiently work around them in order to do their jobs. But for patients, these details are how they make meaning. If misdiagnoses also occur during these interactions, it’s worth taking a closer look at what’s being lost in translation.

Folklore ultimately offers the promise of new solutions to old problems. It allows us to reconsider how we listen to patients, collect data, and address communication issues— all clear benefits in the fight for better diagnostic care. It is also equipped to help us make sense out of the lived reality of OCD— perhaps uniquely so. I see folklore as an exciting potential ally to traditional research and clinical spaces. My hope is that this partnership can help us work more effectively toward our common goals: a better understanding of OCD, and quicker ease for its sufferers.

Works Cited

Dictionary.com. (2023). Creativity. In Random House Unabridged Dictionary. Random House, Inc. https://www.dictionary.com/browse/creativity.

International OCD Foundation. (2025). America’s OCD care crisis: National findings on the failure of effective OCD treatment to research patients. International OCD Foundation. https://iocdf.org/wp-content/uploads/2025/12/Full-Report-Americas-OCD-Care-Crisis-12-9-2025.pdf.

Lindahl, C. (2012). Legends of Hurricane Katrina: The right to be wrong, survivor-to- survivor storytelling, and healing. The Journal of American Folklore, 125 (496), 139–176. https://doi.org/10.5406/jamerfolk.125.496.0139.

McNeill, L. (2013). Folklore rules: A fun, quick, and useful introduction to the field of academic folklore studies. Utah State University Press. https://muse.jhu.edu/book/27822.

Shuman, A. & Bohmer, C. (2016). The stigmatized vernacular: Political asylum and the politics of visibility/recognition. In D. Goldstein & A. Shuman (Eds.), The stigmatized vernacular: Where reflexivity meets untellability. Indiana University Press.

Willsey, K. (2015). Falling out of performance: Pragmatic breakdown in veterans’ storytelling. In T.J. Blank & A. Kitta (Eds.), Diagnosing folklore: Perspectives on disability, health and trauma. University Press of Mississippi.

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