You are on page 1of 10

On the State of Social Media Data for Mental Health Research

Keith Harrigian, Carlos Aguirre, Mark Dredze


Johns Hopkins University
kharrigian@jhu.edu, caguirr4@jhu.edu, mdredze@cs.jhu.edu

Abstract ently noisy (De Choudhury et al., 2017; Arseniev-


Koehler et al., 2018). Scalable methods for cap-
Data-driven methods for mental health treat-
turing an individual’s mental health status, such as
ment and surveillance have become a major
focus in computational science research in the
using regular expressions to identify self-reported
last decade. However, progress in the do- diagnoses or grouping individuals based on activity
main remains bounded by the availability of patterns, have provided opportunities to construct
adequate data. Prior systematic reviews have datasets aware of this heterogeneity (Coppersmith
not necessarily made it possible to measure et al., 2015b; Kumar et al., 2015). However, they
the degree to which data-related challenges typically rely on oversimplifications that lack the
have affected research progress. In this paper, same clinical validation and robustness as some-
we offer an analysis specifically on the state
thing like a mental health battery (Zhang et al.,
of social media data that exists for conduct-
ing mental health research. We do so by in- 2014; Ernala et al., 2019).
troducing an open-source directory of mental Ethical considerations further complicate data
health datasets, annotated using a standardized acquisition, with the sensitive nature of mental
schema to facilitate meta-analysis.1 health data requiring tremendous care when con-
structing, analyzing, and sharing datasets (Benton
1 Introduction
et al., 2017). Privacy-preserving measures, such
The last decade has seen exponential growth as de-identifying individuals and requiring IRB
in computational research devoted to modeling approval to access data, have made it possible to
mental health phenomena using non-clinical data share some data across research groups. However,
(Bucci et al., 2019). Studies analyzing data from these mechanisms can be technically cumbersome
the web, such as social media platforms and peer- to implement and are subject to strict governance
to-peer messaging services, have been particularly policies when clinical information is involved due
appealing to the research community due to their to HIPAA (Price and Cohen, 2019). Moreover,
scale and deep entrenchment within contemporary many privacy-preserving practices require that sig-
culture (Perrin, 2015; Fuchs, 2015; Graham et al., nal relevant to modeling mental health, such as an
2015). Such studies have yielded novel insights individual’s demographics or their social network,
into population-level mental health (De Choudhury are discarded (Bakken et al., 2004). This miss-
et al., 2013; Amir et al., 2019a) and shown promis- ingness has the potential to limit algorithmic fair-
ing avenues for the incorporation of data-driven ness, statistical generalizability, and experimental
analyses in the treatment of psychiatric disorders reproducibility (Gorelick, 2006). Although mental
(Eichstaedt et al., 2018). health researchers may anecdotally recall difficul-
These research achievements have come despite ties acquiring quality data or reproducing prior art
complexities specific to the mental health space due to data sharing constraints, no study to our
often making it difficult to obtain a sufficient sam- knowledge has explicitly quantified this challenge.
ple size of high-quality data. For instance, be- Indeed, prior reviews of computational research
havioral disorders are known to display variable for mental health have noted several of the afore-
clinical presentations amongst different popula- mentioned challenges, but have predominantly dis-
tions, rendering annotations of ground truth inher- cussed technical methods (e.g. model architectures,
1
https://github.com/kharrigian/ feature engineering) developed to surmount exist-
mental-health-datasets ing constraints (Guntuku et al., 2017; Wongkoblap
et al., 2017). Recent work from Chancellor and ence | detection) + (mental health | DISORDER). ‘|’
De Choudhury (2020), completed concurrently indicates a logical or, and DISORDER was replaced
with our own, was the first review to focus specifi- by one of 13 mental health keywords.2 Additional
cally on the shortcomings of data for mental health literature was identified using snowball sampling
research. Our study affirms the findings of Chancel- from the citations of these papers. To moderately
lor and De Choudhury (2020), using an expanded restrict the scope of this work, computational re-
pool of literature that more acutely focuses on lan- search regarding neurodegenerative disorders (e.g.
guage found in social media data. To this end, Dementia, Parkinson’s Disease) was ignored.
we construct a new open-source directory of men-
2.2 Selection Criteria
tal health datasets, annotated using a standardized
schema that not only enables researchers to iden- To enhance parity amongst datasets considered in
tify relevant datasets, but also to identify accessible our meta-analysis, we require datasets found within
datasets. We draw upon this resource to offer nu- the literature search to meet three additional criteria.
anced recommendations regarding future dataset While excluded from subsequent analysis, datasets
curation efforts. that do not meet this criteria are maintained with
complete annotations in the aforementioned digital
2 Data directory. In future work, we will expand our scope
of analysis to reflect the multi-faceted computa-
To generate evidence-based recommendations re- tional approaches used by the research community
garding mental health dataset curation, we require to understand mental health.
knowledge of the extant data landscape. Unlike
some computational fields which have a surplus 1. Datasets must contain non-clinical electronic
of well-defined and uniformly-adopted benchmark media (e.g. social media, SMS, online forums,
datasets, mental health researchers have thus far search query text).
relied on a decentralized medley of resources. This 2. Datasets must contain written language (i.e.
fact, spurred in part by the variable presentations text) within each unit of data .
of psychiatric conditions and in part by the sen- 3. Datasets must contain a dependent variable
sitive nature of mental health data, thus requires that captures or proxies a psychiatric condi-
us to compile a new database of literature. In this tion listed in the DSM-5 (APA, 2013).
section, we detail our literature search, establish
Our first criteria excludes research that examines
inclusion/exclusion criteria, and define a list of
electronic health records or digitally-transcribed
dataset attributes to analyze.
interviews (Gratch et al., 2014; Holderness et al.,
2.1 Dataset Identification 2019). Our second criteria excludes research that,
for example, primarily analyzes search query vol-
Datasets were sourced using a breadth-focused lit- ume or mobile activity traces (Ayers et al., 2013;
erature search. After including data sources from Renn et al., 2018). It also excludes research based
the three aforementioned systematic reviews (Gun- on speech data (Iter et al., 2018). Our third criteria
tuku et al., 2017; Wongkoblap et al., 2017; Chan- excludes research in which annotations are only
cellor and De Choudhury, 2020), we searched loosely associated with their stated mental health
for literature that lie primarily at the intersec- condition. For instance, we filter out research that
tion of natural language processing (NLP) and seeks to identify diagnosis dates in self-disclosure
mental health communities. We sought peer- statements (MacAvaney et al., 2018), in addition to
reviewed studies published between January 2012 research that proposes using sentiment as a proxy
and December 2019 in relevant conferences (e.g. for mental illness (Davcheva et al., 2019). This
NAACL, EMNLP, ACL, COLING), workshops last criteria also inherently excludes datasets that
(e.g. CLPsych, LOUHI), and health-focused jour- lack annotation of mental health status altogether
nals (e.g. JMIR, PNAS, BMJ). (e.g. data dumps of online mental health support
We searched Google Scholar, ArXiv, and platforms and text-message counseling services)
PubMed to identify additional candidate articles. (Loveys et al., 2018; Demasi et al., 2019).
We used two search term structures — 1) (mental 2
Depression, Suicide, Anxiety, Mood, PTSD, Bipolar, Bor-
health | DISORDER) + (social | electronic) + me- derline Personality, ADHD, OCD, Panic, Addiction, Eating,
dia, and 2) (machine learning | prediction | infer- Schizophrenia
2.3 Annotation Schema 139
125 111
We develop a high-level schema to code properties 102

# Articles
of each dataset. In addition to standard reference 100
information (i.e. Title, Year Published, Authors), 75
we note the following characteristics:
50 48
35
• Platforms: Electronic media source (e.g. 25
Twitter, SMS) 0

le
arc l

Ontase ue
• Tasks: The mental health disorders included

Se Initia

ab
Crixcluspply

ab n
h

ter ion

y
ly ts
Da niq

ail ow
ilit

ail
ia
E A

Av Kn
U

Av
as dependent variables (e.g. depression, suici-
dal ideation, PTSD)
Filtering Stage
• Annotation Method: Method for defining
and annotating mental health variables (e.g. Figure 1: Number of articles (e.g. datasets) remaining
regular expressions, community participa- after each stage of filtering. We were unable to readily
tion/affiliation, clinical diagnosis) discern the external availability of datasets for over half
of the studies.
• Annotation Level: Resolution at which
ground-truth annotations are made (e.g. in-
dividual, document, conversation) 3, and 3 additional publications respectively. All
datasets known to be available for distribution are
• Size: Number of data points at each annota-
available with annotations in the appendix, while
tion resolution for each task class
remaining datasets are found our digital directory.
• Language: The primary language of text in Platforms. We identified 20 unique electronic
the dataset media platforms across the 102 datasets. Twitter
• Data Availability: Whether the dataset can (47 datasets) and Reddit (22 datasets) were the most
be shared and, if so, the mechanism by which widely studied platforms. YouTube, Facebook, and
it may be accessed (e.g. data usage agreement, Instagram were relatively underutilized for mental
reproducible via API, distribution prohibited health research — each found less than ten times
by collection agreement) in our analysis — despite being the three most-
widely adopted social media platforms globally
If a characteristic is not clear from a dataset’s (Perrin and Anderson, 2019). We expect our focus
associated literature, we leave the characteristic on NLP to moderate the presence of YouTube and
blank; missing data points are denoted where ap- Instagram based datasets, though not entirely given
plicable. While we simplify these annotations for a both platforms offer expansive text fields (i.e. com-
standardized analysis — e.g. different psychiatric ments, tags) in addition to their primary content of
batteries used to annotate depression in individuals video and images (Chancellor et al., 2016a; Choi
(e.g. PHQ-9, CES-D) are simplified as “Survey et al., 2016). It is more likely that use of these plat-
(Clinical)” — we maintain specifics in the digital forms (and Facebook) for research is hindered by
directory. increasingly stringent privacy policies and ethical
concerns (Panger, 2016; Benton et al., 2017).
3 Analysis
Tasks. We identified 36 unique mental health
Our literature search yielded 139 articles referenc- related modeling tasks across the 102 datasets.
ing 111 nominally-unique datasets. Application While the majority of tasks were examined less
of exclusion criteria left us with 102 datasets. A than twice, a few tasks were considered quite fre-
majority of the datasets were released after 2012, quently. Depression (42 datasets), suicidal ideation
with an average of 12.75 per year, a minimum (26 datasets), and eating disorders (11 datasets)
of 1 (2012), and a maximum of 23 (2017). The were the most common psychiatric conditions ex-
2015 CLPsych Shared Task (Coppersmith et al., amined. Anxiety, PTSD, self-harm, bipolar dis-
2015b), Reddit Self-reported Depression Diagno- order, and schizophrenia were also prominently
sis (Yates et al., 2017), and “Language of Mental featured conditions, each found within at least
Health” (Gkotsis et al., 2016) datasets were the four unique datasets. A handful of studies sought
most reused resources, serving as the basis of 7, to characterize finer-grained attributes associated
with higher-level psychiatric conditions (e.g. symp- group may expect to find approximately 1 in 20
toms of depression, stress events and stressor sub- of the labeled individuals are actually living with
jects) (Mowery et al., 2015; Lin et al., 2016). The mental health conditions such as depression (Wolo-
dearth of anxiety-specific datasets was somewhat han et al., 2018), while regular expressions may
surprising given the condition’s prevalence and the fail to distinguish between true and non-genuine
abundance of pyschometric batteries for assessing disclosures of a mental health disorder up to 10%
anxiety (Cougle et al., 2009; Antony and Barlow, of the time (Cohan et al., 2018).
2020). That said, generalized anxiety disorder Primary Language. Six primary languages
(GAD) only accounts for a small proportion of were found amongst the 102 datasets — English
the overall prevalence of anxiety disorders (Bande- (85 datasets), Chinese (10 datasets), Japanese (4
low and Michaelis, 2015) and many other types of datasets), Korean (2 datasets), Spanish (1 dataset),
anxiety disorders (e.g. social anxiety, PTSD, OCD, and Portuguese (1 dataset). This is not to say that
etc.) were typically treated as independent condi- some of the datasets do not include other languages,
tions (Coppersmith et al., 2015a; De Choudhury but rather that the predominant language found in
et al., 2016). the datasets occurs with this distribution. While
Annotation. We identified 24 unique annota- an overwhelming focus on English data is a theme
tion mechanisms. It was common for several an- throughout the NLP community, it is a specific
notation mechanisms to be used jointly to increase concern in this domain where culture often influ-
precision of the defined task classes and/or eval- ences the presentation of mental health disorders
uate the reliability of distantly supervised label- (De Choudhury et al., 2017; Loveys et al., 2018).
ing processes. For example, some form of regular Availability. We were able to identify the avail-
expression matching was used to construct 43 of ability of only 48 of the 102 unique datasets in
datasets, with 23 of these including manual annota- our literature search. Of these 48 datasets, 13 were
tions as well. Community participation/affiliation known not to be available for distribution, generally
(24 datasets), clinical surveys (22 datasets), and due to limitations defined in the original collection
platform activity (3 datasets) were also common agreement or removal from the public record (Park
annotation mechanisms. The majority of datasets et al., 2012; Schwartz et al., 2014). The remaining
contained annotations made on the individual level 35 datasets were available via the following distri-
(63 datasets), with the rest containing annotations bution mechanisms: 18 may be reproduced using
made on the document level (40 datasets).3 an API and instructions provided within the associ-
Size. Of the 63 datasets with individual-level ated article, 12 require a signed data usage agree-
annotations, 23 associated articles described the ment and/or IRB approval, 3 are available without
amount of documents and 62 noted the amount restriction, and 2 may be retrieved directly from the
of individuals available. Of the 40 datasets with author(s) with permission. Of the 22 datasets that
document-level annotations, 37 associated articles used clinically-derived annotations (e.g. mental
noted the amount of documents and 12 noted the health battery, medical history), 7 were unavail-
number of unique individuals. The distribution of able for distribution due to terms of the original
dataset sizes was primarily right-skewed. data collection process and 1 was removed from
One concerning trend that emerged across the the public record. The remaining 14 had unknown
datasets was the presence of a relatively low num- availability.
ber of unique individuals. Indeed, these small sam-
ple sizes may further inhibit model generalization 4 Discussion
from platforms that are already demographically-
In this study, we introduced and analyzed a stan-
skewed (Smith and Anderson, 2018). The largest
dardized directory of social media datasets used
datasets, which present the strongest opportunity to
by computational scientists to model mental health
mitigate the issues presented by poorly representa-
phenomena. In doing so, we have provided a valu-
tive online populations, tend to leverage the noisiest
able resource poised to help researchers quickly
annotation mechanisms. For example, datasets that
identify new datasets that support novel research.
define a mainstream online community as a control
Moreover, we have provided evidence that affirms
3
One dataset was annotated at both a document and indi- conclusions from Chancellor and De Choudhury
vidual level (2020) and may further encourage researchers to
rectify existing gaps in the data landscape. Based Several studies in our review attempted to leverage
on this evidence, we will now discuss potential demographically-matched or activity-based con-
areas of improvement within the field. trol groups as a comparison to individuals living
Unifying Task Definitions. In just 102 datasets, with a mental health condition (Coppersmith et al.,
we identified 24 unique annotation mechanisms 2015b; Cohan et al., 2018). A recent article found
used to label over 35 types of mental health phe- discrepancies between the prevalence of depression
nomena. This total represents a conservative es- and PTSD as measured by the Centers for Disease
timate given that nominally equivalent annota- Control and Prevention and as estimated using a
tion procedures often varied non-trivially between model trained to detect the two conditions (Amir
datasets (e.g. PHQ-9 vs. CES-D assessments, affil- et al., 2019b). While the study posits reasons for
iations based on Twitter followers vs. engagement the difference, it is unable to confirm any causal
with a subreddit) (Faravelli et al., 1986; Pirina and relationship.
Çöltekin, 2018). Minor discrepancies in task defi- More recently, Aguirre et al. (2021) found evi-
nition reflect the heterogeneity of how several men- dence of demographic (gender and racial/ethnic)
tal health conditions manifest, but also introduce bias within datasets from Coppersmith et al. (2014a,
difficulty contextualizing results between different 2015c) that can create fairness issues in down-
studies. Moreover, many of these definitions may stream tasks. They found poor representation and
still fall short of capturing the nuances of mental strong group imbalance in these datasets; however,
health disorders (Arseniev-Koehler et al., 2018). simple changes in dataset size and balance alone
As researchers look to transition computational could not fully account for performance disparities
models into the clinical setting, it is imperative between groups. Indeed, common signs of depres-
they have access to standardized benchmarks that sion recognized in prior linguistic analyses (e.g.
inform interpretation of predictive results in a con- differences in distributions for some categories of
sistent manner (Norgeot et al., 2020). LIWC) were found not to be equally informative
Sharing Sensitive Data. Most existing mental for all demographics. Thus, while performance dis-
health datasets rely on some form of self-reporting parities between demographic groups may certainly
or distinctive behavior to assign individuals into arise due to poor representation at training time,
task groups, but admittedly fail to meet ideal disparities may also arise due to an ill-founded
ground truth standards. The clinically-annotated assumption that mental health outcomes for all
datasets that do exist are either proprietary or do groups can be treated equivalently (Kessler et al.,
not provide a clear mechanism for inquiring about 2003; De Choudhury et al., 2017; Shah et al., 2019).
availability. The dearth of large, shareable datasets Either way, there exists a need to rethink dataset cu-
based on actual clinical diagnoses and medical ration and model evaluation so traditionally under-
ground truth is problematic given recent research represented groups are not further hindered from
that calls into question the validity of proxy-based receiving adequate mental health care.
mental health annotations (Ernala et al., 2019; This all said, the presence of downstream
Harrigian et al., 2020). By leveraging privacy- bias in mental health models is admittedly dif-
preserving technology (e.g. blockchain, differen- ficult to define and even more difficult to fully
tial privacy) to share patient-generated data, re- eliminate (Gonen and Goldberg, 2019; Blod-
searchers may ultimately be able to train more ro- gett et al., 2020). Nonetheless, the lack
bust computational models (Elmisery and Fu, 2010; of demographically-representative sampling de-
Zhu et al., 2016; Dwivedi et al., 2019). In lieu of scribed above would serve as a valuable start-
implementing complicated technical approaches to ing point to address. Increasingly accurate demo-
preserve the privacy of human subjects within men- graphic inference tools may aid in constructing
tal health data, researchers may instead consider es- datasets with demographically-representative co-
tablishing secure computational environments that horts (Huang and Carley, 2019; Wood-Doughty
enable collaboration amongst authenticated users et al., 2020). Researchers may also consider ex-
(Boebert et al., 1994; Rush et al., 2019). panding the diversity of languages in their datasets
Addressing Bias. There remains more to be to account for variation in mental health pre-
done to ensure models trained using these datasets sentation that arises due to cultural differences
perform consistently irrespective of population. (De Choudhury et al., 2017; Loveys et al., 2018).
References Stevie Chancellor and Munmun De Choudhury. 2020.
Methods in predictive techniques for mental health
Carlos Aguirre, Keith Harrigian, and Mark Dredze. status on social media: a critical review. NPJ digital
2021. Gender and racial fairness in depression re- medicine.
search using social media. In Proceedings of the
16th conference of the European Chapter of the As- Stevie Chancellor, Andrea Hu, and Munmun
sociation for Computational Linguistics (EACL). De Choudhury. 2018. Norms matter: contrast-
ing social support around behavior change in online
Silvio Amir, Mark Dredze, and John W. Ayers. 2019a. weight loss communities. In CHI.
Mental health surveillance over social media with
digital cohorts. In CLPsych. Stevie Chancellor, Zhiyuan Lin, Erica L. Goodman,
Stephanie Zerwas, and Munmun De Choudhury.
Silvio Amir, Mark Dredze, and John W Ayers. 2019b. 2016a. Quantifying and predicting mental illness
Mental health surveillance over social media with severity in online pro-eating disorder communities.
digital cohorts. In CLPsych. In CSCW.
Martin M Antony and David H Barlow. 2020. Hand-
Stevie Chancellor, Tanushree Mitra, and Munmun
book of assessment and treatment planning for psy-
De Choudhury. 2016b. Recovery amid pro-anorexia:
chological disorders. Guilford Publications.
Analysis of recovery in social media. In CHI.
American Psychiatric Association APA. 2013. Diag-
Dongho Choi, Ziad Matni, and Chirag Shah. 2016.
nostic and statistical manual of mental disorders
What social media data should i use in my research?:
(DSM-5®). American Psychiatric Pub.
A comparative analysis of twitter, youtube, reddit,
Alina Arseniev-Koehler, Sharon Mozgai, and Stefan and the new york times comments. In ASIS&T.
Scherer. 2018. What type of happiness are you
looking for?-a closer look at detecting mental health Arman Cohan, Bart Desmet, Andrew Yates, Luca Sol-
from language. In CLPsych. daini, Sean MacAvaney, and Nazli Goharian. 2018.
Smhd: A large-scale resource for exploring online
John W Ayers, Benjamin M Althouse, Jon-Patrick language usage for multiple mental health condi-
Allem, J Niels Rosenquist, and Daniel E Ford. 2013. tions. In COLING.
Seasonality in seeking mental health information on
google. American journal of preventive medicine, Glen Coppersmith, Mark Dredze, and Craig Harman.
44(5):520–525. 2014a. Quantifying mental health signals in twitter.
In CLPsych.
Shrey Bagroy, Ponnurangam Kumaraguru, and Mun-
mun De Choudhury. 2017. A social media based in- Glen Coppersmith, Mark Dredze, Craig Harman, and
dex of mental well-being in college campuses. CHI. Kristy Hollingshead. 2015a. From ADHD to SAD:
Analyzing the language of mental health on twitter
David E Bakken, R Rarameswaran, Douglas M Blough, through self-reported diagnoses. In CLPsych.
Andy A Franz, and Ty J Palmer. 2004. Data obfusca-
tion: Anonymity and desensitization of usable data Glen Coppersmith, Mark Dredze, Craig Harman,
sets. IEEE Security & Privacy. Kristy Hollingshead, and Margaret Mitchell. 2015b.
CLPsych 2015 shared task: Depression and PTSD
Borwin Bandelow and Sophie Michaelis. 2015. Epi- on twitter. In CLPsych.
demiology of anxiety disorders in the 21st century.
Dialogues in clinical neuroscience, 17(3):327. Glen Coppersmith, Craig Harman, and Mark Dredze.
2014b. Measuring post traumatic stress disorder in
Adrian Benton, Glen Coppersmith, and Mark Dredze. twitter. In ICWSM.
2017. Ethical research protocols for social media
health research. In First ACL Workshop on Ethics in Glen Coppersmith, Ryan Leary, Eric Whyne, and Tony
Natural Language Processing. Wood. 2015c. Quantifying suicidal ideation via lan-
guage usage on social media. In Joint Statistics
Su Lin Blodgett, Solon Barocas, Hal Daumé III, and Meetings Proceedings, Statistical Computing Sec-
Hanna Wallach. 2020. Language (technology) is tion, JSM, volume 110.
power: A critical survey of” bias” in nlp.
Glen Coppersmith, Kim Ngo, Ryan Leary, and An-
William E Boebert, Thomas R Markham, and Robert A thony Wood. 2016. Exploratory analysis of social
Olmsted. 1994. Data enclave and trusted path sys- media prior to a suicide attempt. In CLPsych.
tem. US Patent 5,276,735.
Jesse R Cougle, Meghan E Keough, Christina J Ric-
Sandra Bucci, Matthias Schwannauer, and Natalie cardi, and Natalie Sachs-Ericsson. 2009. Anxiety
Berry. 2019. The digital revolution and its impact disorders and suicidality in the national comorbidity
on mental health care. Psychology and Psychother- survey-replication. Journal of psychiatric research,
apy: Theory, Research and Practice. 43(9):825–829.
Elena Davcheva, Martin Adam, and Alexander Benlian. George Gkotsis, Anika Oellrich, Tim Hubbard,
2019. User dynamics in mental health forums – a Richard Dobson, Maria Liakata, Sumithra Velupil-
sentiment analysis perspective. In Wirtschaftsinfor- lai, and Rina Dutta. 2016. The language of mental
matik. health problems in social media. In CLPsych.

Munmun De Choudhury. 2015. Anorexia on tumblr: A Hila Gonen and Yoav Goldberg. 2019. Lipstick on a
characterization study. In 5th international confer- pig: Debiasing methods cover up systematic gender
ence on digital health 2015. biases in word embeddings but do not remove them.

Munmun De Choudhury, Michael Gamon, Scott Marc H Gorelick. 2006. Bias arising from missing data
Counts, and Eric Horvitz. 2013. Predicting depres- in predictive models. Journal of clinical epidemiol-
sion via social media. ICWSM. ogy.

Munmun De Choudhury and Emre Kiciman. 2017. Melissa W Graham, Elizabeth J Avery, and Sejin Park.
The language of social support in social media and 2015. The role of social media in local government
its effect on suicidal ideation risk. In ICWSM. crisis communications. Public Relations Review.

Munmun De Choudhury, Emre Kıcıman, Mark Dredze, Jonathan Gratch, Ron Artstein, Gale M. Lucas, Giota
Glen Coppersmith, and Mrinal Kumar. 2016. Dis- Stratou, Stefan Scherer, Angela Nazarian, Rachel
covering shifts to suicidal ideation from mental Wood, Jill Boberg, David DeVault, Stacy Marsella,
health content in social media. CHI. David R. Traum, Albert A. Rizzo, and Louis-
Philippe Morency. 2014. The distress analysis in-
Munmun De Choudhury, Sanket S. Sharma, Tomaz terview corpus of human and computer interviews.
Logar, Wouter Eekhout, and René Clausen Nielsen. In LREC.
2017. Gender and cross-cultural differences in so-
Sharath Chandra Guntuku, David B Yaden, Margaret L
cial media disclosures of mental illness. In CSCW.
Kern, Lyle H Ungar, and Johannes C Eichstaedt.
Orianna Demasi, Marti A. Hearst, and Benjamin Recht. 2017. Detecting depression and mental illness on
2019. Towards augmenting crisis counselor training social media: an integrative review. Current Opin-
by improving message retrieval. In CLPsych. ion in Behavioral Sciences, 18:43–49.

Sarmistha Dutta, Jennifer Ma, and Munmun De Choud- Keith Harrigian, Carlos Aguirre, and Mark Dredze.
hury. 2018. Measuring the impact of anxiety on on- 2020. Do models of mental health based on so-
line social interactions. In ICWSM, pages 584–587. cial media data generalize? In ”Findings of ACL:
EMNLP”.
Ashutosh Dhar Dwivedi, Gautam Srivastava, Shalini
Eben Holderness, Philip Cawkwell, Kirsten Bolton,
Dhar, and Rajani Singh. 2019. A decentralized
James Pustejovsky, and Mei-Hua Hall. 2019. Distin-
privacy-preserving healthcare blockchain for iot.
guishing clinical sentiment: The importance of do-
Sensors.
main adaptation in psychiatric patient health records.
Johannes C Eichstaedt, Robert J Smith, Raina M Mer- In ClinicalNLP.
chant, Lyle H Ungar, Patrick Crutchley, Daniel Binxuan Huang and Kathleen M Carley. 2019. A hier-
Preoţiuc-Pietro, David A Asch, and H Andrew archical location prediction neural network for twit-
Schwartz. 2018. Facebook language predicts depres- ter user geolocation.
sion in medical records. Proceedings of the National
Academy of Sciences. Molly Ireland and Micah Iserman. 2018. Within and
between-person differences in language used across
Ahmed M Elmisery and Huaiguo Fu. 2010. Privacy anxiety support and neutral reddit communities. In
preserving distributed learning clustering of health- CLPsych.
care data using cryptography protocols. In 2010
IEEE 34th Annual Computer Software and Applica- Dan Iter, Jong Yoon, and Dan Jurafsky. 2018. Auto-
tions Conference Workshops. matic detection of incoherent speech for diagnosing
schizophrenia. In CLPsych.
Sindhu Kiranmai Ernala, Michael L Birnbaum,
Kristin A Candan, Asra F Rizvi, William A Ster- Jared Jashinsky, Scott H. Burton, Carl Lee Han-
ling, John M Kane, and Munmun De Choudhury. son, Joshua H. West, Christophe G. Giraud-Carrier,
2019. Methodological gaps in predicting mental Michael D Barnes, and Trenton Argyle. 2014.
health states from social media: Triangulating diag- Tracking suicide risk factors through twitter in the
nostic signals. In CHI. us. Crisis, 35 1:51–9.

Carlo Faravelli, Giorgio Albanesi, and Enrico Poli. Ronald C Kessler, Patricia Berglund, Olga Demler,
1986. Assessment of depression: a comparison of Robert Jin, Doreen Koretz, Kathleen R Merikangas,
rating scales. Journal of affective disorders. A John Rush, Ellen E Walters, and Philip S Wang.
2003. The epidemiology of major depressive dis-
Christian Fuchs. 2015. Culture and economy in the age order: results from the national comorbidity survey
of social media. Routledge. replication (ncs-r). Jama, 289(23):3095–3105.
Mrinal Kumar, Mark Dredze, Glen Coppersmith, and A Perrin and M Anderson. 2019. Share of us adults us-
Munmun De Choudhury. 2015. Detecting changes ing social media, including facebook, is mostly un-
in suicide content manifested in social media follow- changed since 2018. pew research center.
ing celebrity suicides. HT.
Andrew Perrin. 2015. Social media usage. Pew re-
Yaoyiran Li, Rada Mihalcea, and Steven R. Wilson. search center, pages 52–68.
2018. Text-based detection and understanding of
changes in mental health. In SocInfo. Inna Pirina and Çağrı Çöltekin. 2018. Identifying de-
pression on reddit: The effect of training data. In
Huijie Lin, Jia Jia, Quan Guo, Yuanyuan Xue, Qi Li, Jie SMM4H.
Huang, Lianhong Cai, and Ling Feng. 2014. User-
level psychological stress detection from social me- W Nicholson Price and I Glenn Cohen. 2019. Privacy
dia using deep neural network. In 22nd ACM inter- in the age of medical big data. Nature medicine.
national conference on Multimedia.
Brenna N Renn, Abhishek Pratap, David C Atkins,
Huijie Lin, Jia Jia, Liqiang Nie, Guangyao Shen, and Sean D Mooney, and Patricia A Areán. 2018.
Tat-Seng Chua. 2016. What does social media say Smartphone-based passive assessment of mobility in
about your stress?. In IJCAI, pages 3775–3781. depression: Challenges and opportunities. Mental
health and physical activity, 14:136–139.
David E Losada, Fabio Crestani, and Javier Parapar.
2017. erisk 2017: Clef lab on early risk prediction Sarah Rush, Sara Britt, and John Marcotte. 2019. Icpsr
on the internet: experimental foundations. In CLEF. virtual data enclave as a collaboratory for team sci-
ence.
David E Losada, Fabio Crestani, and Javier Parapar.
2018. Overview of erisk: early risk prediction on Koustuv Saha and Munmun De Choudhury. 2017.
the internet. In CLEF. Modeling stress with social media around incidents
of gun violence on college campuses. CSCW.
Kate Loveys, Jonathan Torrez, Alex Fine, Glen Mori-
arty, and Glen Coppersmith. 2018. Cross-cultural H. Andrew Schwartz, Johannes Eichstaedt, Margaret L.
differences in language markers of depression on- Kern, Gregory Park, Maarten Sap, David Stillwell,
line. In CLPsych. Michal Kosinski, and Lyle Ungar. 2014. Towards
assessing changes in degree of depression through
Sean MacAvaney, Bart Desmet, Arman Cohan, Luca Facebook. In CLPsych.
Soldaini, Andrew Yates, Ayah Zirikly, and Nazli Go-
harian. 2018. Rsdd-time: Temporal annotation of Ivan Sekulic, Matej Gjurković, and Jan Šnajder. 2018.
self-reported mental health diagnoses. In CLPsych. Not just depressed: Bipolar disorder prediction on
reddit. In 9th Workshop on Computational Ap-
David N. Milne, Glen Pink, Ben Hachey, and Rafael A. proaches to Subjectivity, Sentiment and Social Me-
Calvo. 2016. CLPsych 2016 shared task: Triaging dia Analysis.
content in online peer-support forums. In CLPsych.
Deven Shah, H Andrew Schwartz, and Dirk Hovy.
Danielle Mowery, Craig Bryan, and Mike Conway. 2019. Predictive biases in natural language process-
2015. Towards developing an annotation scheme for ing models: A conceptual framework and overview.
depressive disorder symptoms: A preliminary study arXiv preprint arXiv:1912.11078.
using twitter data. In CLPsych.
Guangyao Shen, Jia Jia, Liqiang Nie, Fuli Feng, Cun-
Danielle L. Mowery, Albert Park, Craig J Bryan, and jun Zhang, Tianrui Hu, Tat-Seng Chua, and Wenwu
Mike Conway. 2016. Towards automatically clas- Zhu. 2017. Depression detection via harvesting so-
sifying depressive symptoms from twitter data for cial media: A multimodal dictionary learning solu-
population health. In PEOPLES. tion. In IJCAI.

Beau Norgeot, Giorgio Quer, Brett K Beaulieu-Jones, Judy Hanwen Shen and Frank Rudzicz. 2017. Detect-
Ali Torkamani, Raquel Dias, Milena Gianfrancesco, ing anxiety through reddit. In CLPsych.
Rima Arnaout, Isaac S Kohane, Suchi Saria, Eric
Topol, et al. 2020. Minimum information about clin- Han-Chin Shing, Suraj Nair, Ayah Zirikly, Meir
ical artificial intelligence modeling: the mi-claim Friedenberg, Hal Daumé, and Philip Resnik. 2018.
checklist. Nature medicine. Expert, crowdsourced, and machine assessment of
suicide risk via online postings. In CLPsych.
Galen Panger. 2016. Reassessing the facebook experi-
ment: critical thinking about the validity of big data Aaron Smith and Monica Anderson. 2018. Social me-
research. Information, Communication & Society, dia use in 2018. Pew.
19(8):1108–1126.
Elsbeth Turcan and Kathy McKeown. 2019. Dreaddit:
Minsu Park, Chiyoung Cha, and Meeyoung Cha. 2012. A Reddit dataset for stress analysis in social media.
Depressive moods of users portrayed in twitter. In LOUHI.
JT Wolohan, Misato Hiraga, Atreyee Mukherjee, Zee- Of the datasets that were available for distri-
shan Ali Sayyed, and Matthew Millard. 2018. De- bution via one of the above mechanisms, we
tecting linguistic traces of depression in topic-
noted the following 27 unique mental health condi-
restricted text: Attending to self-stigmatized depres-
sion with NLP. In LCCM Workshop. tions/predictive tasks:

Akkapon Wongkoblap, Miguel A Vadillo, and Vasa • Attention Deficit Hyperactivity Disorder
Curcin. 2017. Researching mental health disorders (ADHD)
in the era of social media: systematic review. JMIR,
19(6):e228. • Alcoholism (ALC)
Zach Wood-Doughty, Paiheng Xu, Xiao Liu, and Mark • Anxiety (ANX)
Dredze. 2020. Using noisy self-reports to predict
twitter user demographics. • Social Anxiety (ANXS)

Andrew Yates, Arman Cohan, and Nazli Goharian.


• Asperger’s (ASP)
2017. Depression and self-harm risk assessment in • Autism (AUT)
online forums. In EMNLP.
• Bipolar Disorder (BI)
Lei Zhang, Xiaolei Huang, Tianli Liu, Zhenxiang Chen,
and Tingshao Zhu. 2014. Using linguistic features • Borderline Personality Disorder (BPD)
to estimate suicide probability of chinese microblog • Depression (DEP)
users. In HCC.
• Eating Disorder (EAT)
Haining Zhu, Joanna Colgan, Madhu Reddy, and
Eun Kyoung Choe. 2016. Sharing patient-generated • Recovery from Eating Disorder (EATR)
data in clinical practices: an interview study. In
AMIA. • General Mental Health Disorder (MHGEN)

Ayah Zirikly, Philip Resnik, Özlem Uzuner, and Kristy • Obsessive Compulsive Disorder (OCD)
Hollingshead. 2019. CLPsych 2019 shared task: • Opiate Addiction (OPAD)
Predicting the degree of suicide risk in Reddit posts.
In CLPsych. • Opiate Usage (OPUS)

A Available Datasets • Post Traumatic Stress Disorder (PTSD)


• Panic Disorder (PAN)
Ultimately, we identified 35 unique mental health
datasets that were available for distribution. A sub- • Psychosis (PSY)
set of annotations for these datasets, along with • Trauma from Rape (RS)
original reference information, can be found in Ta-
• Schizophrenia (SCHZ)
ble 1 (see next page).
We categorize dataset availability using four dis- • Seasonal Affective Disorder (SAD)
tinct distribution mechanisms. • Self Harm (SH)
• DUA: The dataset requires researchers to sign • Stress (STR)
a data usage agreement that outlines the terms • Stressor Subjects (STRS)
and conditions by which the dataset may be
analyzed; in some cases, this also requires • Suicide Attempt (SA)
institutional authorization and oversight (e.g. • Suicidal Ideation (SI)
IRB approval) • Trauma (TRA)
• API: The dataset may be reproduced (with a
reasonable degree of effort) using instructions
provided in the dataset’s primary article and
access to a public-facing application program-
ming interface (API)
• AUTH: The dataset may be accessed by di-
rectly contacting the original author(s)
• FREE: The dataset is hosted on a public-
facing server, accessible by all without any
additional restrictions
Reference Platform(s) Task(s) Level Individuals Documents Availability
BI, PTSD, SAD,
Coppersmith et al. (2014a) Twitter Ind. 7k 16.7M DUA
DEP
Coppersmith et al. (2014b) Twitter PTSD Ind. 6.3k - DUA
Jashinsky et al. (2014) Twitter SI Doc. 594k 733k API
Twitter,
Lin et al. (2014) Sina Weibo, STR, STRS Ind. 23.3k 490k API
Tencent Weibo
ANX, EAT, OCD,
Coppersmith et al. (2015a) Twitter SCHZ, SAD, BI, Ind. 4k 7M DUA
PTSD, DEP, ADHD
Coppersmith et al. (2015b) Twitter PTSD, DEP Ind. 1.7k - DUA
De Choudhury (2015) Tumblr EAT, EATR Ind. 28k 87k API
Reddit,
Kumar et al. (2015) SI Ind. 66k 19.1k API
Wikipedia
Mowery et al. (2015) Twitter DEP Doc. - 129 AUTH
Chancellor et al. (2016b) Tumblr EATR Ind. 13.3k 67M API
Coppersmith et al. (2016) Twitter SA Ind. 250 - DUA
PSY, EAT, ANXS,
SH, BI, PTSD,
De Choudhury et al. (2016) Reddit Ind. 880 - API
RS, DEP, PAN,
SI, TRA
ANX, BPD, SCHZ,
SH, ALC, BI,
Gkotsis et al. (2016) Reddit Ind. - - API
OPAD, ASP, SI,
AUT, OPUS
Lin et al. (2016) Sina Weibo STR Doc. - 2.6k FREE
Milne et al. (2016) Reach Out SH Doc. 1.2k - DUA
Mowery et al. (2016) Twitter DEP Doc. - 9.3k AUTH
Bagroy et al. (2017) Reddit MHGEN Doc. 30k 43.5k API
De Choudhury and Kiciman (2017) Reddit SI Ind. 51k 103k API
Losada et al. (2017) Reddit DEP Ind. 887 530k DUA
Saha and De Choudhury (2017) Reddit STR Doc. - 2k API
Shen et al. (2017) Twitter DEP Ind. 300M 10B FREE
Shen and Rudzicz (2017) Reddit ANX Doc. - 22.8k API
Yates et al. (2017) Reddit DEP Ind. 116k - DUA
Chancellor et al. (2018) Reddit EAT Doc. - 2.4M API
ANX, EAT, OCD,
Cohan et al. (2018) Reddit SCHZ, BI, PTSD, Ind. 350k - DUA
DEP, ADHD, AUT
Dutta et al. (2018) Twitter ANX Ind. 200 209k API
Ireland and Iserman (2018) Reddit ANX Ind. - - API
Li et al. (2018) Reddit MHGEN Ind. 1.8k - API
Losada et al. (2018) Reddit EAT, DEP Ind. 1.5k 1.2M DUA
Pirina and Çöltekin (2018) Reddit DEP Doc. - 1.2k API
Shing et al. (2018) Reddit SI Ind. 1.9k - DUA
Sekulic et al. (2018) Reddit BI Ind. 7.4k - API
Wolohan et al. (2018) Reddit DEP Ind. 12.1k - API
Turcan and McKeown (2019) Reddit STR Doc. - 2.9k FREE
Zirikly et al. (2019) Reddit SI Ind. 496 32k DUA

Table 1: Characteristics of datasets that meet our inclusion criteria and are known to be accessible.
The full set of annotations may be found in our digital directory (https://github.com/kharrigian/
mental-health-datasets).

You might also like