ProMED, early warning system on disease outbreaks, in peril

ProMED, early warning system on disease outbreaks, in peril

The early warning disease network that alerted the world to the original SARS outbreak and the start of the Covid-19 pandemic appears to be in peril.

A number of the senior moderators of ProMED-mail, a program operated by the International Society of Infectious Diseases, posted a letter of protest early Thursday, challenging a recently revealed plan to charge for subscriptions to the service. The group of 21 moderators, who announced they were suspending work for ProMED, expressed a lack of confidence in the ISID’s administrative operations, suggesting ProMED needs to find a new home.

“For most of us, creating ProMED’s content is a labor of love. However, we cannot be expected to continue working on good will alone,” the moderators wrote. 

The prospect of a potential collapse of the nearly 30-year old program has the infectious diseases community aghast.

“ProMED is a fundamentally critical public health surveillance system. It’s provided key insight through major emerging disease events,” said John Brownstein, chief innovation officer at Boston Children’s Hospital who has created a number of online surveillance tools, including Health Map

“It’s absolutely needed,” he said.

Oliver Morgan, director of the pandemic and epidemic intelligence system at the World Health Organization’s Hub for Pandemic and Epidemic Intelligence in Berlin, said ProMED is a pioneer of global disease surveillance.

“All of us in the public health surveillance business, we are a little bit concerned about this situation,” Morgan told STAT. “Many people find ProMED invaluable, really. It’s a huge community of users — consumers as well as providers of information. And I think we’d all like to see it carry on, for sure.” 

While other organizations have followed its lead, ProMED was the first disease surveillance system to use unofficial sources to gain intelligence about disease outbreaks affecting people, animals and even plants around the globe.

Prior to its inception in 1994, governments — which often have incentives not to be forthcoming — were the main sources of information about disease events. ProMED takes tips from scientists who can remain anonymous to the general readership — though not the moderators. It was also created at a time when access to the internet and email was just taking off, allowing people from around the world to supply information to its moderators, information those moderators assessed, curated and sent out to the broader world. 

In February of 2003, it was ProMED that alerted the world to the fact that a new disease that caused pneumonia had started to spread in China’s Guangdong province. That disease became known as SARS — severe acute respiratory syndrome. In September 2012, an Egyptian doctor working in Saudi Arabia wrote to ProMED to reveal he had treated a patient who died from pneumonia triggered by a new coronavirus, a camel virus we now know as MERS — Middle East respiratory syndrome. Just before midnight on Dec. 30, 2019, a ProMED “RFI” post — request for information — was the first warning the outside world received of a fast growing outbreak in Wuhan, China. That was the start of the Covid-19 pandemic.

“Each of the coronaviruses of the 21st century were first reported on by ProMED,” said Larry Madoff, who served as editor of the program from 2002 to 2021. In the spring of 2021, Madoff said he was “forced out” by the organization’s CEO, Linda McKinnon and Alison Holmes, president of the ISID executive committee. A professor of infectious diseases at the University of Massachusetts, Madoff refers to himself as editor emeritus of ProMED, a title bestowed upon him by the moderators with whom he worked.

Those same moderators — many of whom are signatories to the letter posted Thursday — wrote to the ISID to protest Madoff’s departure in 2021. They were told the matter was private and management would not discuss the rationale with them.

ProMED has not appointed a new editor, though it named a chief content officer, Jarod Hanson, in July 2022. According to Hanson’s LinkedIn profile, he is also director of the CBRN — Chemical, Biological, Radiological, and Nuclear Consequence Management — defense coordination office of the U.S. Army Medical Research and Development Command.

STAT tried on Thursday to reach Linda MacKinnon, CEO of the ISID, for comment on the situation. But she did not return calls or texts.

The moderators, experts in their fields who are paid a modest annual stipend for their work — a few thousand dollars — revealed their pay was in arrears and that they had been told it would not be forthcoming for another two months.

Anger between the moderators and the organization has been brewing for some time. Their letter of protest was both posted overnight to ProMED’s website and sent by email to ProMED’s subscribers, who numbered around 80,000 when Madoff was editor. By Thursday morning, though, the letter had been removed from the ProMED website. (Brownstein posted it on Twitter; it can be read here.)

Madoff said that the move suggests ProMED no longer has editorial independence. “I think that is a sort of publisher-editorial relationship that I think is untenable and unethical,” he said.

In its post dated July 14, the ISID revealed it had been having trouble raising the money needed to sustain ProMED. A fundraising drive that aimed for $1 million brought in $20,000. “To put it frankly, ProMED is in dire financial straits,” the post said.

It accused unnamed parties of using ProMED data without permission, saying that the ISID had stopped posting to Twitter and closed off its RSS feed permanently “to stop unauthorized data scraping.” And it said it was putting the organization’s invaluable archive behind a paywall, allowing people without subscriptions to search only for posts that had gone up in the previous 30 days.

The letter was signed “the ProMED team” — a fact that riled the moderators, who said they were given no prior warning that the change was coming.

“We fervently believe that there is an ongoing need for the kind of rapid, curated disease outbreak reporting that ProMED has provided since its inception almost 30 years ago. ProMED is effectively a 24/7 global news organization that requires proper corporate governance, a stable and adaptable IT infrastructure, and private and corporate fundraising capabilities from its de facto publisher. Unfortunately, such leadership and capacities appear to be beyond the scope and mission of ISID alone and will likely require a co-hosting partnership in a new administrative home with stable funding and a sustainable business model,” the moderators wrote.

The ISID’s 2021 990 form — a tax filing required of not-for-profit organizations — revealed the organization lost over $1 million that year. Where in 2020 ProMED had taken in nearly $3 million in contributions and grants, in 2021 that figure dropped to about $1.3 million.

Madoff said he opposed the idea of a subscription model for ProMED, suggesting it would undermine the critical role the program plays around the globe.

“It’s a public good,” he said. “During my time running ProMED I always resisted the idea of charging for it, for several reasons. First, because those who need it most often are the least able to afford it. Second because by diminishing your user base you would diminish your ability to get reports. So much of our news comes from our readers.”

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