Most of the world’s leading virologists, epidemiologists and public health experts first learned of the outbreak that would become the COVID-19 pandemic on Dec. 30, 2019.
The source? A fairly obscure, 30-year-old e-mail service called ProMED.
The next day, Helen Branswell, a Canadian journalist working at STAT News, referenced the ProMED post about “unexplained pneumonias” in the Hubei province of China, and how the news was giving her “SARS flashbacks.”
It would be another week before Chinese officials would confirm an outbreak of disease that was caused by a novel coronavirus, but the cat was already out of the bag by then.
Now, ProMED – a low-tech, low-cost, high-level crowdsourcing program that serves as a 24/7 early-warning system on disease outbreaks – is on the verge of collapse. And it was Ms. Branswell who once again broke the news.
The problem, it seems, is largely money. “To put it frankly, ProMED is in dire financial straits,” the organization warned. Incredibly, in a world where a pandemic just cost the economy trillions of dollars, ISID is having trouble raising a couple of million dollars a year to continue the program’s operations.
Many charities and not-for-profit groups have a similar dilemma. Funders, from governments to philanthropists, all want to support programs, and the more novel the better. But no one wants to fund operations, the kinds of necessities such as salaries and rent that keep the lights on for these programs to do their solid work.
ProMED is operated by the International Society for Infectious Diseases. Last year, ISID launched a US$1-million fundraising campaign to support it, but only managed to scrape up US$20,000.
A secondary problem is the way that some organizations – some are ProMED partners, others are for-profit companies – lift the data from the site. To prevent data scraping or theft, the ISID plans to transform ProMED into a paid subscription service, putting its archive behind a paywall so that only paid members can access posts that are more than 30 days old, and turning off its X account (formerly Twitter) and its RSS feed (an online file that contains details about every piece of content a site has published).
These changes – and the way they were reportedly made unilaterally – prompted many of ProMED’s moderators, editors and copy editors to withdraw their services. (Most of the contributors are scientists and researchers who are paid stipends of token amounts.)
At this point, you may be wondering: Does this actually matter to the public, or is this just inside-baseball?
Well, while ProMED may not be daily reading for anyone but a small group of infectious disease nerds – it currently has only about 80,000 users and contributors worldwide – the information it provides is invaluable, and ultimately impactful.
Governments have all sorts of political reasons to hush up news of infectious disease outbreaks. Organizations such as the World Health Organization face all sorts of bureaucratic hurdles before it can publish data or make pronouncements. We saw this graphically illustrated in 2020, when there was so much hesitation and delay around declaring COVID-19 to be a pandemic.
ProMED gets news out early, almost in real time. It has a proven track record, with the early signs of emerging infectious disease threats like Ebola, SARS, MERS, Zika, Nipa, Chikungunya and more all becoming public thanks to ProMED. The service also alerts the world to outbreaks of animal and plant diseases that matter tremendously, but get a lot less media attention.
Public health is pretty good at collecting data, and tracking cases following a disease outbreak. But it isn’t great at identifying emerging problems.
There is also a lot of noise out there, as people get sick all the time, in large numbers, particularly in low-resource settings. With its curated information-sharing, ProMED can identify patterns and red flags. This is particularly important in low-income countries where infectious diseases thrive and can have devastating consequences.
On Friday, for example, ProMED posted about an outbreak in South Sudan that resembled viral hemorrhagic fever. This sort of information allows a rapid response that can prevent further spread, and save lives.
But this sort of information should not be behind a paywall. If it is, those who can least afford it will be denied crucial information, and researchers will be caught on their backfoot in those important early days.
COVID-19 taught us that modelling, forecasting and predictive analytics all matter if we’re going to prevent the next pandemic, or at least minimize its effects. It would be a shame to lose a critical public health surveillance system that provides many of those services – especially for what amounts to petty cash in our global health spending.
André Picard