The renown global health pioneer Paul Farmer once said almost 20 years ago that Ebola, AIDS, and tuberculosis outbreaks suggest the need for “dynamic, systemic, and critical” models, particularly in the care of the socially and medically segregated poor.
This month, Harvard medical school student and Farmer’s research assistant, Cameron Nutt, reminds us of the challenge in seeing through disadvantage, adding that “the absence of evidence is not evidence of absence”, on a Slate article titled Zika originated in Africa. Why are we so sure it’s harmless there.
From population surveys to individual health records, particularly within public systems and low-resource settings, data collection on emerging diseases has been widely performed using paper and pen.
In the face of the recent spur of Zika virus in Latin America, for example, good-old paper and pen methodologies have consistently failed to meet Farmer’s aspirations from 1996.
Viruses are unique for their ability to quickly mutate, challenging our defense mechanisms.
To make matters more complex, regions presenting the highest rates of Zika infection, such as the northeast of Brazil, are also endemic for chikungunya and dengue viruses which are closely related and complicate diagnosis.
As Farmer highlights, efforts within a quickly changing global health scenario “must be able to track rapidly changing clinical, even molecular, phenomena and link them to large-scale (sometimes transnational) social forces.”
Therefore, an interesting question might be: is a virus’s rate of transmission as fast as our current electronic systems’ ability to collect, model, and disseminate information?
Some time ago, the answer to this question might have been yes, our electronic systems were not effective in remote regions without the access of internet connection, for example.
Is a virus’s rate of transmission as fast as our current electronic systems’ ability to collect, model, and disseminate information?
Concern for patient confidentiality and data encryption in the early stages of mobile application development hindered electronic data collection, also known as EDC. We were shackled by paper and pen technologies, which extensively increased our response time to emerging diseases.
With the near-universal access to mobile technology, and the fast advancements of app development, the ability to gather and store data on-the-go is now easily attainable.
Apps such as Teamscope have shown us that “dynamic, systematic, and critical” EDC models are available to us, and are a crucial component of rapid response to global outbreaks.
Since the first reported cases, data on the rate of spread of the Zika virus, as well as dengue and chikungunya viruses are regularly reported by the Brazilian Ministry of Health.
Many times I have found myself questioning how the ministry has collected its data, and how reliable and accurate its depictions of the reality on the ground actually are?
When visiting Dora Helena, a 20-year-old Brazilian student suspected of viral infection, she explained how at three-months pregnant in the spring of 2015, she began having fevers and sharp joint pain that kept her from bending her fingers.
During her first visit to the nearest clinic Dora Helena was tested for dengue, but the tests came back negative and she was discharged. Two weeks later, as her fever continued, she returned to the clinic.
She was then given a tentative diagnosis of dengue, but her doctor wasn’t so sure. Dora Helena was among a growing number of patients presenting with what her doctor described as a “weaker dengue” — and they were showing up at an alarming rate.
Though the rate of the unknown cases was clearly higher than expected to the experienced physician, no mechanism was in place for collecting, reporting or tracking the data on these cases.
After two “failed” attempts at a diagnosis, Dora Helena went home while pregnant, not knowing for sure what caused her symptoms and remained, along with many others, invisible to a system absent of evidence.
With the implementation of EDC technologies, we can collect, report, and track cases such as Dora Helena’s and know where spikes of infection emerge, so that we can more rapidly respond to the unexpected and more importantly, ensure that no one goes unnoticed.
Farmer P. Social inequalities and emerging infectious diseases. Emerg InfectDis. 1996 Oct-Dec;2(4):259–69. Review. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2639930/pdf/8969243.pdf
Nutt C. Zika Originated in Africa. Why Are We So Sure It’s Harmless There? 2016 Aug; Slate.
Sena B. In the War on Zika, a persistent fog. 2016 May; Undark Magazine. http://undark.org/article/in-the-war-on-zika-a-persistent-fog/
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