John Snow’s cholera studies in London of the mid-19th century marked a seminal moment in our appreciation for how fieldwork, data collection, and visualization became an integral part of public health. When Web 2.0 and its veneration for user-generated content intersected with location-enabled smart phones, we entered yet another generation of possibilities.
Now, every dimension of human health – from nutrition to disease to illness to accidents – is in some way being studied via GIS. Mapping of the information is central to the efforts, whether it’s at the stage of data collection, spatial analysis, or visualization of trends. Being able to visualize the patterns of spreading diseases is key to appreciating their origins and subsequent movements, as these examples of the CoronaVirus (COVID-19), measles and Ebola demonstrate.
The dots can’t be connected if the computer can’t put them on a map, and acquiring timely, accurate, current, and complete data is a challenge in the field of public health. Multiple levels of government, from local to federal, maintain health departments. Their policies and practices are designed to uphold laws that mandate protecting patient confidentiality while also sharing information to help researchers and administrators understand, plan, and respond. Health-related data from the past is the easiest to organize and make available, as the Centers for Disease Control does through its 500 Cities platform, or the Global Health Observatory that the World Health Organization maintains. The raw data can be overwhelming in quantity and diversity, and other entities – such as the Institute for Health Metrics and Evaluation – spend significant effort on effective data visualizations.
Large organizations such as the Centers for Disease Control, the World Health Organization, or the U.S. Department of Health and Human Services have their own authoritative sources for data, whether it involves collecting it themselves or via regular partnerships with other formal entities. For example, the WHO collects data on measles and rubella that its member states provide via their own national surveillance systems.
One shortcoming of these types of national-level data sets is their currency and completeness. For example, it is well known that the data reflect only a portion of the true cases of a given illness or disease that are or were present on the ground at any given time. For this reason, many in the public health community have embraced the supplementary addition of crowd-sourced data and data that can be collected in real-time via mobile devices. Platforms for this type of data collection are easier than ever to use and steadily more robust and reliable. Magpi is one such platform. Originally designed for efforts promoting vaccinations, it has now extended much further into additional health sectors and beyond. One important type of advancement in this area is the use of icon-based interfaces, such as those created by Sapelli, to bypass language or literacy barriers.
Magpi and numerous similar applications are ideally used in the field by individuals trained in the protocols of data collection, even if briefly and informally. Train-the-trainer workshops build capacity for data collection in many settings and for many purposes, and adding this type of technology-focused professional development is a new and important addition for many international organizations. Sets of training guidelines and protocols are being distributed as a resource for those fueling the growing demand. Sight and Life, an organization dedicated to combating malnutrition, recently dedicated an issue of its magazine to the topic of technology and entrepreneurship, and within that was published a practical guide for implementers and practitioners on Using Mobile Technology for Nutrition Programs. University departments or centers that engage regularly with international data collection efforts are offering workshops on how to use phones in this manner, such as this recent one at the University of North Carolina.
Another source of current health-related data is that which we are able to contribute ourselves, 24/7. Are you into sharing? Tell the world what type of flu symptoms you’re experiencing on any number of your social media devices, and there’s a chance that whiny tweet or Instagram photo of you and your thermometer could become a data point within Sickweather. Apps like these scour many sources of social media data and – with a dash or two of artificial intelligence added in – can generate predictions or forecasts of trending patterns. Other times, platforms monitor media headlines and health-related stories to tag events and their locations, something to which you can contribute at HealthMap, a project supported by the Computational Epidemiology Lab at Boston Children’s Hospital. This group also supports Flu Near You, whose patterns look suspiciously just like a population distribution map at this point in the season.
I’m suspicious of health-related maps that depend exclusively on user-generated content. When I’m feeling lousy it doesn’t occur to me to break out my phone to share my health status, and I’m not alone in this. There is likely to be widespread under-counting. And what about the block party of people in Duluth who all agree to telecast their symptoms at the same point in time? Suddenly we’ve got an epidemic hotspot on our hands! So reading about how this type of volunteered geographic information stands up consistently as a supplement and complement to other standard sources of data is both reassuring and interesting. The phone-based data provides with timeliness what it lacks in statistical robustness.
Overall, it’s clear that these efforts are maturing. Very sticky issues remain and will persist, but at least they’re slowly being addressed. The lack of Wi-Fi in rural areas precludes live and immediate uploading of collected data, but apps are being designed with asynchronous collection in mind. Striking a balance between the right to individual privacy and the obligation to protect the public is a persistent matter of interest, so practices and policies must be updated as needed and shared frequently. This is not a trivial matter as we have developed many tens of thousands of health and wellness apps and more are being released all the time. App-building that relies on location-enabled functionality is compelling for entrepreneurs, but the significance for the public health domain has become much more than millennials making maps on Macintoshes. It’s reached the matters of life and death.
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