Enhancing the U.S. TBI data infrastructure: geospatial perspective

ABSTRACT

Traumatic brain injury (TBI) has become a rapidly growing global public health problem. It causes premature loss of lives, the interruption of workforce supply pipelines, increased care demand for injured elderly people, and other socio-economic burdens. This paper presents the importance of and the need for a national comprehensive TBI database that incorporates geospatial data components to help tackle the TBI epidemic. It calls for legislative and research actions to enhance the U.S. TBI data infrastructure to make the use of GIS in TBI research possible. Further, it proposes a multi-tiered conceptual framework and associated implementation strategy to establish the proposed national TBI data structure. The enhanced U.S. TBI data infrastructure will provide a feasible platform to utilize the GIS capabilities for location-based mapping, data analysis and modelling. Precision TBI research, targeted outreach, and education will likely facilitate more effective prevention and better care delivery. The enhanced U.S. TBI database infrastructure will serve as a guiding model for other developing nations. Global concerted efforts on TBI can help improve the overall quality of living around the world.

KEYWORDS:

• TBI (Traumatic Brain Injury)
• public health
• GIS
• geospatial health
• geospatial perspective.

TBI landscape: prevalence, direct and indirect socio-economic cost

Brain injuries present an urgent and severe challenge for modern medicine in general (Katarzyna, Agata, and Marcin 2019). Approximately 69 million people sustain a TBI each year globally (Dewan et al. 2019). Approximately half of the population is likely have one or more TBI over a lifetime (Maas et al. 2017). There has also been a rapid increase of TBI cases, contributing to it as a worldwide public health problem. According to the WHO (2006), TBI will surpass many diseases as the major cause of death and disability. As less developed nations are engaging and experiencing rapid economic transformation, TBI problems have become not only a pressing public health issue, but also a global epidemic mental health problem and socio-economic burden.

In the U.S, TBI is a leading cause of death and lifelong disability among children and young adults, according to the U.S. Centres for Disease Control and Prevention (CDC). It is a growing ‘silent epidemic’ because the complications from TBI, such as impaired cognition and memory, are often not apparent, and because public awareness about TBI is very limited (National Center for Injury Prevention and Control 2010). From 2002–2006, approximately 1.74 million people suffered a TBI each year. Fast forward, 2.87 million people in 2014 have sustained TBI annually (Taylor et al. 2017), which represents a 67% increase in less than a decade.

Beyond the prevalent nature, the healthcare and broader socio-economic cost of TBI has been monumental. From a health perspective, the fundamental hallmark that we humans stand out from the rest of the life forms on earth is our mental capacity. It is impossible to overstate the importance of brain functions in all facets of our daily life. TBI can severely disrupt an individual’s cognitive, social, emotional and physical functioning and cause extensive and prolonged deficits (Tomaszczyk et al. 2014; Vitaz et al. 2003). Moderate and severe TBI often rob us of parts of that capacity suddenly and prematurely. The impact of TBI is not only the acute bodily impairment and cognitive dysfunctions of the injured person, but also many-fold long-term family and societal impacts. Cognitive, emotional, and functional problems after TBI are often extensive and long lasting (Vitaz et al. 2003). The long-term prognosis of severe or recurrent TBI remains poor (Sowers et al. 2018). Research from the 1990s reported estimates, the direct acute care cost ranges from 25,174 USD to 81,153 USD per case (McGregor and Pentland 1997), and projected post-acute rehabilitation programme annual life care cost (1991 dollars) ranges from 222,600 USD to 450,000 USD (Ashley et al. 1997). A recent study on the global macroeconomic burden of road injuries for 166 countries projects 1.8 USD trillion (2010 US$) in 2015–30 (Chen et al. 2019).

The prevalence and serious consequences of TBI have imposed a mounting global socio-economic burden, beyond direct medical cost. In past decades, it was estimated that 44% of the world’s road deaths occurred in Asia, and road traffic injuries were on the verge of an epidemic (Hyder et al. 2007). The two most populated countries, China and India, have being going through rapid economic growth in recent decades, but there have been no recent data on the TBI care cost. Geospatial analysis tools are rarely used in health policy management in China (Kim, Zhang, and Lee 2018). The U.S. and many other developed nations have taken efforts in monitoring and studying the causes and impacts of TBI, while many in non-western developing countries attribute injuries to supernatural causes (Mbakile-Mahlanza, Manderson, and Ponsford 2015).

TBI alters the workforce supply and productivity, and the resources allocation and consumption of a society. Frequently, TBI affects more kids, youth and elderly people. It is a common cause of death and disability from trauma in children and adolescents in the United States (Rivara et al. 2011; Stanley et al. 2012; Courtney-Long et al. 2015). According to the CDC, in 2014 about 2.87 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States, and over 837,000 cases were related to children.

Understanding the interwoven relationship between mental, physical, and social health at various levels of analysis is critical to the overall wellbeing of people, societies, and nations (Maier and al'Absi 2017; Somers, Rowe, and Clay 2009). For example, many TBI patients never recover full social independence (Humphreys et al. 2013). One study indicates a 60.4% unemployment rate among those with moderate to severe TBI (Cuthbert et al. 2015). Beyond direct costs of TBI care, there are tangible and intangible indirect costs at the individual, family, community and national level. Depression and psychological distress are often associated with TBI (Sigurdardottir et al. 2013).

Furthermore, TBI represents the quintessential neuropsychiatric combination of effects in cognition, personality, and the risk for psychiatric disorders (Santopietro et al. 2015). Naturally, the multitude of cognitive and functional deficits make TBI patients more susceptible to mental problems. Neurological disorders are the most common cause of serious disability (Wong et al. 2017), and TBI is a leading cause of disability and mortality (Coronado et al. 2011). The estimated prevalence of depression after TBI is over 50% (Moldover, Goldberg, and Prout 2004). In 2013, a large study based on the data of 1.13 million cases from 1977–2000 found that individuals with TBI (including concussions) were four times more likely to develop a mental illness, and in particular the head injury between ages 11 and 15 years presented the strongest predictor for subsequent development of schizophrenia, depression, and bipolar disorder (Orlovska et al. 2014).

Consequently, the TBI epidemic presents a reality that global societies are burdened with the premature loss of lives, the interruption of workforce supply, and increased care demand for injured elderly people, in addition to mounting direct medical cost. In the U.S., according to the CDC, both the young and old are affected the most, which burns the vitality candle of society at both ends.

The burden of healthcare, the potential of human capital, and economic development are intertwined (Chen 2018). The hidden cost is beyond calculation. It is urgently important to have an accurate and complete database to better analyse, visualize and understand the where, when, how, and why of the TBI ‘silent epidemic’. GIS is proven to be effective in location-based health data mapping, data integration and analysis.

The prevalence, cost and socio-economic burden of TBI provide reasons for incorporating spatial and temporal data and GIS technology. Consequently, this paper calls for a better TBI database infrastructure by proposing a concept for a U.S. TBI database framework to incorporate geospatial data. The expanded data collection and enhanced database infrastructure will facilitate the use of GIS in mapping out TBI distribution patterns and potential clusters and hotspots, which will lead to more precise and integrated research, targeted education, and more effective prevention.

GIS potential in TBI research

GIS can be used in mapping and analysing potential TBI hotspots and associated risk factors, such as natural factors (road construction, topographic slope, speed limit, school safety, sport equipment) and human factors (violence, ageing, drinking and drug abuse, mental health and behaviour management). In fact, GIS has been widely used in other health and epidemiological research. In the past two decades, there has been tremendous development in applying geospatial analyses to health problems (Shi and Kwan 2015). GIS and artificial intelligence (AI) offer an immense emerging role for improving community health and healthcare (Shaw 2012; Kirby, Delmelle, and Eberth 2017; Boulous, Peng, and VoPham 2019). TBI research does not only need GIS utilities but also can benefit from its spatial-temporal mapping, data integration and analytical capabilities. Four major reasons for using GIS in TBI studies are briefly outlined below.

First, in response to rapid growing TBI incidence, much research attention on TBI from both research communities and government agencies has started in recent decades. According to the Traumatic Brain Injury Model System Centres web site (https://www.tbindsc.org/), the Traumatic Brain Injury Model Systems National Data and Statistical Centre began in 1987 and has its primary purpose and focus on advancing medical rehabilitation. The Traumatic Brain Injury Act was enacted in 1996; subsequent state-level legislative efforts were even later. Currently, research progress has been made on post-injury treatment and rehabilitation care. Yet, globally TBI incidence continues to rise. The growing epidemic presents an urgent need for obtaining a better understanding of spatial and temporal distribution patterns of TBI. Are there any TBI hotspots; and if there are, where are they?

Second, TBI is a trauma to the human brain when humans fail to maintain brain’s normal functions in responding to abrupt environmental changes. The changes can be caused by naturally occurring environmental or human-induced risk factors, or both. Geospatial locations, topography, road and weather conditions, neighbourhood socio-economic characteristics, population density, and employment rates are all important in better understanding the physical and socio-cultural environment settings of TBI incidences. GIS has been effectively used in other health issues for spatial data mapping and analysis, such as surface kriging, spatial clusters, and spatial filtering in dealing with cancer and other health data heterogeneity, risk estimation, and data regression of health risk factors (Meliker et al. 2009; Shi 2010; Meliker and Sloan 2011; Kontopantelis et al. 2015; Davies, Jones, and Hazelton 2016). Are different TBI clusters and/or hotspots associated with similar risk factors? It is an obvious environmental epidemiology research need to use GIS for TBI studies.

Third, according to the CDC, the causes of TBI vary, but the leading mechanism includes unintentional falls, being struck by or against an object, motor vehicle crashes, and violence. In an earlier study (Hyder et al. 2007), it was estimated 44% of the world’s road deaths occurred in Asia, and road traffic injuries were on the verge of an epidemic. Where do children and adults fall? What and where are the objects that cause TBI? Are road traffic injuries random or more concentrated at certain locations during certain times? GIS has also emerged as a key tool in predictive crime mapping and policing by many police services to reduce crime (Fitterer, Nelson, and Nathoo 2015; Jefferson 2017). Based on the leading causes of TBI, environmental settings are very important. Accurate and precise mapping of the environment and demographics associated with TBI incidences should be important and effective. Precision in problem-solving is an obvious argument for adoption of a spatial approach (Goodchild 2015).

Finally, accurate spatial and temporal information can help facilitate emergency responding as well as potential predictive TBI mapping. At the same time, a better TBI database will improve more targeted research on the association or correlation among the response time from a 911 call to the arrival of emergency medical technicians & paramedics; the travel time from field treatment to receiving hospital emergency care; and the initial recovery time from a 911 call to the time when a patient regains consciousness, for those with moderate and severe TBI cases. Time is essential in the outcome of TBI, and only an accurate and complete database will help shed light on response and treatment time intervals to improve TBI outcomes and survival.

The geographic location, topography, weather, time of occurrence, time of receiving medical attention, and demographic background of TBI patients are all important geospatial parameters. GIS can use georeferenced TBI data to help better delineate and understand the overall the TBI landscape (i.e. distribution patterns and underlying risk factors).

Enhancing the U.S. TBI database infrastructure

GIS can and should be effective in facilitating better understanding and targeted TBI research through location-based mapping, data integration, and subsequent data analyses and modelling. However, GIS has not been widely used in TBI research, largely due to the lack of a georeferenced TBI database; the existing U.S. TBI Data Registry does not contain accurate location and time data of TBI incidences.

Current TBI data collection methods do not require tracking of precise location data and various time intervals from TBI occurrence to treatments. The CDC data are disseminated in the form of only three broad categories: TBI-related Emergency Department Visits, Hospitalizations, and Deaths (EDHDs). There have been no comparable or standardized data collection templates reported documenting TBI from first responders to ER visits to hospitalization at any local, state or national level. The geospatial component of each TBI incident is only kept at local emergency dispatcher records or police reports. Therefore, researchers cannot find the spatial distribution patterns of TBI cases at county, city, state and national levels, considering the fact the TBI patients can go to different clinics and hospitals.

We propose to expand the existing U.S. TBI data registry by including geospatial data to allow a broader and more effective implementation of GIS. This endeavour requires legislative support and actions. Specifically, the implementation strategy consists of an integrated and expanded data structure. The implementation process needs to start at the fundamental data collection level and may include developing standardized templates and overall database design enhancement. Geospatial variables may include the incidence time and location, and basic demographics of the TBI patient, such as age, gender, employment status, education, place of residence, and possibly other variables. These parameters make accurate and precise environment-based research and public outreach possible. For example, many important questions can be potentially addressed with the help of GIS:

1. Are there any geographic hotspots of TBI occurrences?

2. If certain clusters or hotspots emerge, what could be the possible physical and social environmental risk factors for various clusters?

3. What are the spatial distribution and reoccurrence patterns of TBI cases at different spatial scales: nationally, regionally and locally?

4. Is there any correlation between TBI and physical and social environmental risk factors?

5. What are possible mitigation measures to prevent or reduce TBI in different locations if potential risk factors behind different hotspots are identified?

The proposed is a multi-tiered system. The U.S. TBI data infrastructure for data collection and dissemination promotes an optimal allocation of human and financial resources on TBI care management and precision medical research. Conceptually, it consists of four major tiers (see Figure 1).

Figure 1. Topology of the proposed U.S. TBI data infrastructure framework.

The first tier is data collection, and it can be done by both emergency first responders and hospital and other care facility staff. The second tier is data compilation and database development, and it is done by the Department of Health and Human Services (HHS). The third tier is a data dissemination portal, which is the CDC, in collaboration with the HHS and possibly other government agencies. The final tier encompasses the back-end data users, including researchers, policy makers, and the general public.

In addition to the conceptual framework, an overall implementation strategy is also important and is outlined in Figure 2. The implementation strategy consists of unified and standardized templates designed for data collection and public access. For data collection, geospatial location could be accurate GPS coordinates (outside of a city limit) or general street address or nearest road intersection of TBI incidents (within city limit). Other geospatial data such as smartphone apps may include environmental factors (weather, topography), employment, contextual social environment setting (home, road, workplace, commercial, school), and general demographic info (age, gender, ethnicity).

Figure 2. TBI data collection and dissemination templates and data variables.

First responders and hospitals face different kinds of urgency and have different amounts of time to collect data. Time is critical for TBI patients' survival. The time window from sustaining the injury to receiving medical services often draws a vital line between recovery and disability, or between life and death for some cases. Therefore, medical first responders’ data logging time should be brief, or done retrospectively, primarily recording accurate location data. Accurate geographic locations of TBI incidence can be easily obtained and recorded by emergency medical and law enforcement first responders. Most smart phones can have a good GPS app, where time and coordinates can be easily extracted from an in-situ photos and videos. Police may be able to help log more information about the incident and demographics. Hospitals can add more information as needed.

Currently, the U.S. TBI data are compiled by the HHS. A standard database format across the nation can be established so that the on-site and hospital data can be easily combined into a complete TBI database. This proposed TBI database framework will build upon the currently existing one, preserving the continuity with two minor revisions. To protect patients’ privacy, it would be a good practice to establish a national TBI case digital ID for each patient, instead of using the SSN or driver’s licence ID, to safeguard identifiable personal information. In addition, State ID can be created and incorporated into the database. For example, MD as the text ID or 7 as the numerical ID for Maryland, by the date of admission to the Union. State ID will be useful for quick access and double safeguard of spatial data quality control. Not everyone is familiar with the GPS longitudes in the western hemisphere. State ID will help spot data entry errors.

Public data sharing is done at the CDC. The CDC analysts can double check again to make sure specific private identification information is filtered out (stored in the system, but not accessible by the general public). National data management, preliminary and aggregated analyses can be done as needed for the access of the general public and research community. This way, data will be scalable and accessible at different spatial resolutions and scales, such as county, city, state, and national level.

Discussion and conclusion

The complex web of risk factors in the modern environment and associated dynamic changes have caused and will continue to cause many public health problems. TBI is one of the notably rapid-growing pandemic public health issues due to rapid globalization and increased human mobility. Analyses and visualization of health data with geospatial references can present far more accurate pictures of TBI in the U.S. For example, GIS can be successfully used to map the mobility, mortality and hospitalization rates of TBI cases (Colantonio et al. 2011; Hu et al. 2013) and significantly improve quality and efficacy in health research (Shaw and McGuire 2017). Accurate geospatial data collection and an enhanced TBI database can expand the uses of GIS to help deliver better public education, preventative measures, and TBI healthcare guidelines.

Legislative actions to improve the U.S. national TBI database infrastructure and utilization of GIS in TBI research are of far-reaching significance. Comprehensive understanding of TBI facilitates integrated research, effective prevention, better care and broader support for the survivors. Geospatial data components of the TBI database will allow interdisciplinary collaborative research and concerted efforts among healthcare providers, researchers, health informatics and GIS professionals, patients and caregivers in tackling this growing public health problem. TBI is not just a pressing public health issue, it imposes significantly adverse impacts on mental health and socio-economic development. Expanding the existing U.S. TBI data infrastructure is not only necessary, but also significant in guiding other nations. In time, geospatial data and GIS can play a significant role in TBI research and prevention, subsequently, improving the quality of life globally.

Disclosure statement

No potential conflict of interest was reported by the authors.