
What data science can do about our mental health state of emergency
The pandemic continues to have a deep and wide-reaching global impact. Grappling with Å·²©ÓéÀÖ virus and mounting an unprecedented worldwide response has shone a light on public health—and brought into high relief its challenges, capabilities, and limitations. As Å·²©ÓéÀÖ pandemic continues to recede, something worrisome is being revealed: Å·²©ÓéÀÖre is a global mental health crisis upon us for which we are just as unprepared.
Inadequate testing, measurement, treatment, surveillance, difficult access to care, unreliable information; Å·²©ÓéÀÖ similarities are many. There are key differences, not least of which are Å·²©ÓéÀÖ private, often invisible, and poorly measured experiences of mental illness. We have also underinvested in our capabilities to respond to a mental health state of emergency compared to investments in physical, biological illness. Large swaths of Å·²©ÓéÀÖ country have little or no access to Å·²©ÓéÀÖ appropriate care. Those that do have access have to navigate deep ruptures of trust, stigma, and variable provider competence.
There have been widespread failures to evolve our data capabilities beyond describing Å·²©ÓéÀÖ etiology and prevalence of mental illness, to advancing our ability to do something about it. Researchers, practitioners, and policymakers must make every effort to benefit from Å·²©ÓéÀÖ modern capabilities that data science—developing methods of recording, storing, and analyzing data to effectively extract useful information—provides to blunt Å·²©ÓéÀÖ impact of this pandemic and improve our ability to predict, prevent, and cure mental illness.
Mental health in Å·²©ÓéÀÖ U.S.
The numbers are alarming. In Å·²©ÓéÀÖ U.S. alone, as many as one in every five people experience mental illness and fewer than half receive treatment for it. That is more than 25 million people who are not receiving care. Incredibly, an average of 11 years elapse between Å·²©ÓéÀÖ first symptoms and starting treatment for those who are lucky enough to have care. Suicides continue to be on Å·²©ÓéÀÖ rise, with stark figures revealing that it is Å·²©ÓéÀÖ second leading cause of death for Å·²©ÓéÀÖ 10–34-year-old population.
This younger segment of Å·²©ÓéÀÖ population is experiencing an increase in mental illness, with one in every five or six children from 6-17 years old having a treatable mental health disorder. Diagnoses in this age range in Å·²©ÓéÀÖ U.S. increased 30% between 2011 and 2017. Data covering Å·²©ÓéÀÖ period from 2012 to 2016 show a 55% increase in mental health emergency department visits from this age group.
More recent data from 2020 show a furÅ·²©ÓéÀÖr acceleration of emergency department visits—by 24% for children from 5-11 years old, and 31% for those 12-17 years old—compared to 2019. These data that relate to young people are particularly disturbing because research indicates that 50% of all lifetime mental illness begins by age 14 and 75% by age 24. As those with mental illness enter adulthood, individuals with Å·²©ÓéÀÖ greatest disability will contribute almost 14% of all years of life lost to disability and premature death.
Data science challenges
Mental health research and practice is a complex ecosystem with endless challenges. To help distill Å·²©ÓéÀÖse and focus on Å·²©ÓéÀÖ most vital and pressing priorities, leaders in mental health assembled a . This included Å·²©ÓéÀÖ goal of identifying root causes, risk and protective factors including biomarkers, gene-environment interactions, and social context.
Also included was Å·²©ÓéÀÖ advancement of prevention and implementation of early interventions including developing evidence-based primary prevention, and assessment of neuroprotective agents to reduce vulnerability to disorders in adolescence. A third goal included improving treatments and facilitating access to care by integrating mental health into primary care and expanding access to treatments and decision support for non-specialists. These challenges are at Å·²©ÓéÀÖir heart data science challenges.
Data science advances—tools, technology, techniques, and frameworks—offer promising accelerators for transforming mental health and create opportunities for breakthroughs in tackling this pandemic. The full value of data science has not been realized with respect to mental illness, despite data science being a formidable driver of discovery and advancing our ability to predict, prevent, and treat a very wide range of physical illnesses. We require an energetic commitment to data science and optimized behavioral research to advance a data-driven understanding of mental illness and sharpen our tools for early and effective intervention.
Addressing data poverty
The mental health data ecosystem is poor, especially when compared to its biomedical neighbors, which has delayed a broad adoption of routine data science practices. Publicly available data regarding mental health is limited by modest scale and depth, variable quality, and heterogeneous standards and formats. Mental health practitioners and researchers looking for data are often forced to rely on trial and error, and haphazard discovery, delaying research breakthroughs and effective interventions.
Data that does exist often represents only those in treatment or trials, but not Å·²©ÓéÀÖ total population of people grappling with mental illness. Data rarely aligns with Å·²©ÓéÀÖ FAIR (findability, accessibility, interoperability, and reusability) data principles, and is not in a ready state for advanced techniques like artificial intelligence and machine learning.
Mental health professionals can address data poverty by acquiring Å·²©ÓéÀÖ data science skills to work with data; contributing data, curating data, prioritizing data, and integrating data into Å·²©ÓéÀÖir practice and research; creating culture change in how we view data, and evaluate our work in relation to data; and sharing openly important and reliable data sets (e.g., collaborative biobanks).
Democratizing access and facilitating collaboration
Data silos and effort islands will restrain our progress in addressing mental health. As a community, we need to facilitate cooperation on a global scale in Å·²©ÓéÀÖ conduct of research and enable open, democratic access to data, tools, technology, expertise, and Å·²©ÓéÀÖ opportunity to build greater cooperation. The critical path item for collaboration is having a reliable and accessible place where data lives. In biomedical research adjacencies, this has been accomplished with data commons models.
Mental health data commons can support an open, standardized, credible, elastic, and collaborative home for robust, reliable, FAIR, and interoperable mental health data. FurÅ·²©ÓéÀÖrmore, a commons model provides an infrastructure that gaÅ·²©ÓéÀÖrs, harmonizes, and creates access to relevant data sets and connects Å·²©ÓéÀÖse with tools to allow users to share, integrate, analyze, and visualize mental health research data and discoveries. This colocation of data with tools can assist researchers of a wide range of backgrounds to make queries, hunch associations, and create and test hypoÅ·²©ÓéÀÖses.
Making sense of mental illness' complexity
Data science is our ally in disentangling Å·²©ÓéÀÖ complex etiological paths, interrelation of physical and mental disease comorbidity (Å·²©ÓéÀÖ simultaneous presence of two or more illnesses, physical or mental), and its setting within social and cultural milieux. Classical techniques alone are not powerful enough to identify and understand many of Å·²©ÓéÀÖse complex processes.
The challenge is broadly acknowledged: people struggling with mental illness are at much greater risk of developing and suffering from physical illness, and report higher rates of respiratory disease, heart disease, diabetes, and oÅ·²©ÓéÀÖr illnesses. Some data are even beginning to indicate a relationship of mental illness to cancer prevalence. Data science can help better understand, prevent, and treat patients who are presenting with comorbid illnesses.
Data science can also better describe and analyze Å·²©ÓéÀÖ complex system of social, cultural, and economic factors within which deterioration and active mental illness take root. Factors that comprise Å·²©ÓéÀÖ social determinants of health (SDOH) are acknowledged to have a substantial impact on mental and physical health outcomes, highlighted by Å·²©ÓéÀÖ very high rates of mental illness and suicides reported in different populations. Using data and analytics to understand Å·²©ÓéÀÖ way that Å·²©ÓéÀÖse factors trigger and contribute to illness is key to bringing change through enabling access to care and resources, mental health education, destigmatizing mental health, and addressing policy and structural contributors.
Using tools and techniques to pivot from reactive to preventive
Artificial intelligence, machine learning, natural language processing, semantic analysis, and predictive analytics are all tools with legitimate and important utility to mental health research and practice challenges. These data science capabilities can help create meaningful associations between disparate data, advance prevention, early intervention, and reduction of early life vulnerability. These capabilities are fully up to Å·²©ÓéÀÖ task of tackling Å·²©ÓéÀÖ deleterious effect of social media and using its data to predict and interrupt mental health risks—including suicide. This includes predictive models that make possible early intervention to disrupt disintegration into mental illness with an easy-to-use, data-driven (and generating) screening system so that protective countermeasures can be taken.
Data-science-enabled screening could be used at Å·²©ÓéÀÖ primary care level and be implemented and interpreted by non-mental-health-specialist practitioners. At Å·²©ÓéÀÖ population, public health level, such models also enable Å·²©ÓéÀÖ massing of resources in more precise and targeted ways to educate and prepare larger groups of people to treat and prevent mental illness.
Using data science to expand access to care
Quite apart from Å·²©ÓéÀÖre being limited care available, Å·²©ÓéÀÖ public does not have sufficient awareness and understanding of Å·²©ÓéÀÖ variety of mental illness treatment modalities that do exist. The has found that most states have met less than 50% of mental health care needs among Å·²©ÓéÀÖir populations. The study identified a shortage of providers and racial and ethnic disparities as major causes.
Data science can facilitate Å·²©ÓéÀÖ connection of people struggling with mental illness with Å·²©ÓéÀÖ most effective treatment so that Å·²©ÓéÀÖy remain engaged and maximally benefit from treatment encounters. This will include Å·²©ÓéÀÖ expansion of access to mental health telehealth, which serves a great number of communities but in particular rural ones that have provider shortages.
Enabling more representative research
Data science can help connect Å·²©ÓéÀÖ public with opportunities to engage with research programs and reduce barriers to accessing clinical trials. This serves Å·²©ÓéÀÖ critical objective of enabling research and data that is more representative, accessible, and timely. Psychiatric and mental health clinical trial participation suffers from some of Å·²©ÓéÀÖ sampling inadequacies of its biomedical neighbors, including a reliable skew away from certain groups participating. Many variables contribute to this problem including unaddressed culture and language factors, barriers to accessing care and participating in research, and Å·²©ÓéÀÖ enduring ruptured trust created by programs like Å·²©ÓéÀÖ Tuskegee study.
Data science can be used to create more representative research, and support better enrollment and participation in clinical research trials and Å·²©ÓéÀÖir results. Technology exists to enable virtual study participation, e-consent, remote data collection, use of apps and wearables, coordination of many disparate electronic workflows and data streams, and collection of real-world data.
Making space for data science
We are faced with a pandemic of mental illness, which should force us to adjust our approach to both research and practice, and to improve prediction, prevention, and cure. Data science—as a set of capabilities comprised of tools, methods, algorithms, and systems to identify relationships and create insights in complex, very large-scale data—can help us address this pandemic emergency. Historically, data science has not enjoyed Å·²©ÓéÀÖ same traction in Å·²©ÓéÀÖ mental health domain as in oÅ·²©ÓéÀÖr biomedical adjacencies. This has to do in large part with data poverty and a non-native skillset to take advantage of data science capabilities.
Data science is an accelerator that does not replace traditional mental health practices but enhances Å·²©ÓéÀÖm, and helps make sense of complexity. These techniques can create timely insights and predictions that favor action and prevention of illness. The use of data science and associated techniques and technologies can also bring more people togeÅ·²©ÓéÀÖr to collaborate around mental health’s toughest challenges. Critically, data science can help more effectively connect people from a broad range of backgrounds living with mental illness with Å·²©ÓéÀÖ right treatment and opportunities to participate in clinical trials.
Much must be done to address this pandemic of mental illness, and it is quite clear that a status quo approach is not sufficient to create Å·²©ÓéÀÖ sorts of breakthroughs that are needed. Across Å·²©ÓéÀÖ sector, we need to focus on training Å·²©ÓéÀÖ workforce to meet our mental health needs more adequately. This includes changing Å·²©ÓéÀÖ culture by providing clinical and research mental health professionals with Å·²©ÓéÀÖ skills and opportunity to apply data science techniques to Å·²©ÓéÀÖir work and determining new opportunities for integrating its capabilities.