The Zika Open project launched last month amid concerns that valuable knowledge was lost during the Ebola crisis
The Zika crisis is reaching a critical point. Brazil, the epicentre of the virus, has 863 confirmed cases of infant microcephaly, or brain-virus, which scientists suspect could be caused by the Zika-carrying mosquito. 6,480 cases are under investigation, and the virus has spread across the whole of the Americas. Zika has spread across the globe too – cases have recently been reported in China.
The outbreak has affected 38 countries and territories. The disease is predominantly transmitted via mosquitoes, so in order to contain the virus, effective mosquito control measures need to be in place. The world’s biggest health organisations believe the best way to establish these are to open up data, globally.
The World Health Organisation (WHO) declared Zika to be a global health emergency while simultaneously putting out a call to share more data to stem the spread of the virus.
Dr Adam Kucharski, lecturer in infectious disease epidemiology at the London School of Hygiene & Tropical Medicine explained how we can observe the transmission of Zika and why data collection is essential: “Like most infectious diseases, we can rarely observe Zika transmission directly. Instead, we rely on data to give us a glimpse into what is really going on; and without good data, the picture will be very blurry indeed.”
Last month, leading global health bodies including the WHO, Bill and Melinda Gates Foundation, Médecins Sans Frontières, and the US National Institute of Health committed to sharing data and results relevant to the Zika crisis and future public health emergencies as openly as possible.
The WHO described the importance of data sharing as one of the “most salient lessons learned during the Ebola crisis. As the disease spread and the world mobilised to understand the virus and find medical countermeasures and other disease control interventions, much valuable knowledge was lost or action delayed because data was not shared in a timely and open manner”.
During any public health emergency, opening up data is vital, says Dr Ben Goldacre, senior clinical research fellow at the University of Oxford. It’s vital because we need to know about how disease is spread and what is working when it comes to disease prevention.
“Some of these are about infrastructure: we need systems and mechanisms in place to ensure data is shared swiftly. But a lot of it is about culture. Some countries may be reluctant to share data, because they have legitimate concerns about not getting credit for producing it, or being harmed as a result of sharing it.
“Academics and journal editors have also been part of the problem: the results of trials and epidemiological surveys are often not shared during a pandemic, and sometimes not shared at all. There have been recent moves through the WHO to try to speed this up, with positive statements from journals and others, but we’re waiting – optimistically – to see if this generates substantive change.”
Dr Chris Dye, director of the Department of Strategy, Policy and Information who launched the Zika Open initiative explained why open data is so important when it comes to combatting Zika: “Data and information are the basis for understanding the epidemic and driving the response by health authorities. The sooner we have accurate data, the faster and more precise the response. In particular, neurological disorders with suspected links to Zika infection are a relatively recent discovery; we want to rapidly build the database to better understand this new phenomenon.”
The WHO isn’t fussy about what data it gathers regarding Zika; officials believe all data has the potential to be useful when trying to combat a global crisis. Different countries might report symptoms and cases in different ways and without detailed data which can make it challenging to paint a strong picture of the overall situation or apply insights from one location to another.
Kucharski added: “Obtaining and sharing good data is crucial during a new disease outbreak. There can be a wealth of information contained within medical data, but often a range of expertise is required to get at it. The data may contain insights into diagnosis and treatment, or could help with forecasting and planning control measures.”
In order to secure patients’ privacy, researchers de-identify records by removing names and precise geographical locations.
Thankfully, no country is refusing to open their data, but because Zika has until recently been linked with only a mild illness, there weren’t, until the WHO’s recent call out, any systems in place to gather it.
But how can this data be used to combat Zika and what benefit will countries who open up their data have? The answer lies in how pertinently the data can address key questions concerning the spread of disease. Among those are whether microcephaly in Brazil has already peaked, and can we see cases continuing throughout 2016. Other uses for open data include working out how successful mosquito control measures are, and how can we improve the advice given to women who may become pregnant.
Dye from the WHO explains how some countries, for example Colombia, El Salvador and the French territories, already have good data, and are freely sharing it. “We have had a swift and positive response to Zika Open.”
“Researchers are keen to share their work, and we are keen to help them. Together we are providing a resource that will help to contain the Zika epidemic and, if this initiative is a success, other epidemics in future.”
(This story first appeared on The Guardian)
