23.2 C
New York
Friday, July 12, 2024

A Crucial Early Warning System for Disease Outbreaks Is in Jeopardy

Internal dissent within the mostly volunteer disease-news network known as ProMED—which alerted the world to the earliest cases of Covid, Middle East Respiratory Syndrome (MERS), and SARS—has broken out into the open and threatens to take down the internationally treasured network unless an external sponsor can be found.

The struggle for the future of the low-tech site, which also sends out each piece of content on a no-reply email list with 20,000 subscribers, has been captured in dueling posts to its front page. On July 14, a post by ProMED’s chief content officer, a veterinarian and infectious-disease expert named Jarod Hanson, announced that ProMED is running out of money. Because it is being undermined by data-scraping and reselling of its content, Hanson wrote, ProMED would turn off its RSS and Twitter feeds, limit access to its decades of archives to the previous 30 days, and introduce paid subscriptions.

Hanson is at the top of ProMED’s masthead, and the post was signed “the ProMED team,” which gave the announced changes the feeling of a united action. That turned out not to be the case. Very early on August 3, a post addressing “Dear friends and readers of ProMED” appeared on the site’s front page. The open letter was signed by 21 of its volunteer and minimally paid moderators and editors, all prominent physicians and researchers, and it makes clear that no unity existed.

“Although the [July post] was signed by ‘The ProMED Team,’ we the undersigned want to assure you that we had no prior knowledge,” the open letter stated. “With great sadness and regret … we, the undersigned, are hereby suspending our work for ProMED.”

The letter was taken off the site within a few hours, but the text had already been pushed to email subscribers. (WIRED’s copy is here.) On Friday, signers of the open letter said they had been locked out of the site’s internal dashboard. The site’s regular rate of posting slowed Friday and Saturday, but appeared to pick up again on Sunday.

Maybe this sounds like a small squabble in a legacy corner of the internet—but to public health and medical people, ProMED falling silent is deeply unnerving. For more than 20 years, it has been an unmissable daily read, ever since it received an emailed query in February 2003 about chat-room rumors of illnesses near Hong Kong. As is the site’s practice, that initial piece of intel was examined by several volunteer experts and cross-checked against a separate piece of news they found online. In its post, which is not currently accessible, ProMED reproduced both the email query and the corroborating information, along with a commentary. That post became the first news published outside China of the burgeoning epidemic of SARS viral pneumonia, which would go on to sweep the world that spring and summer—and which was acknowledged by the regional government less than 24 hours afterward.

Using the same system of tips and local news sources, combined with careful evaluation, ProMED published the first alerts of a number of other outbreaks, including two more caused by novel coronaviruses: MERS and Covid, which was detected via two online articles published by media in China on December 30, 2019. Such alerts also led the World Health Organization to reconsider what it will accept as a trustworthy notice of the emergence of epidemics. When the organization rewrote the International Health Regulations in the wake of SARS, committing member nations to a public health code of conduct, it included “epidemic intelligence from open sources” for the first time.

On the surface, the dispute between ProMED’s moderators and its leadership team—backed by the professional organization that hosts the project, the International Society for Infectious Diseases (ISID)—looks like another iteration of a discussion that has played out online for years: how to keep publishing news if no one wants to pay for it. But while that is an enduring problem, the question posed by the pause in ProMED’s operations is bigger than subscriptions. It looks more like this: How do you make a case for the value of human-curated intelligence in a world that prefers to pour billions into AI?

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

“ProMED might not always be the fastest, but it always provides important context that would not come through a news report,” says John Brownstein, an epidemiologist and chief innovation officer at Boston Children’s Hospital, who cofounded the automated online outbreaks database HealthMap and has collaborated with ProMED. “It’s the anti-social media, in a way. It’s a trusted voice.”

“ProMED possesses trained scientists that are able to discern what is really a problem and what is fake news,” says Scott J. N. McNabb, a research professor at Emory University’s Rollins School of Public Health and a former chief of public health surveillance at the US Centers for Disease Control and Prevention. “That's a tremendous advantage. So the reports are not coming from uninformed individuals, they're coming from professionals that have the medical expertise and public health expertise to really discern: ‘Is this genuine or not?’”

To understand why the fate of ProMED feels momentous, it helps to know a little bit about its history. The deliberately Web 1.0 site—it has no comment section and runs no graphics, so as not to stress the bandwidth in low-income nations—was created in 1994 and began being hosted by ISID in 1999. Its chief founder was the late John Payne Woodall, an entomologist and virologist who had a hand in most of the post-World War II build-up of global public health infrastructure, working for the Rockefeller Foundation, the WHO, and the CDC. (Cofounders were Stephen Morse, a professor of epidemiology at Columbia University’s Mailman School of Public Health, and Barbara Hatch Rosenberg, a biological weapons expert and former professor of microbiology at SUNY Purchase.)

Woodall believed that everyday people’s reports of events could constitute important early warnings of looming problems. The value of open source intelligence might seem obvious today, with every movement of the war in Ukraine, for instance, tracked on Twitter. But at the time, Woodall was challenging the accepted view that official public health surveillance data, gathered by governments and nongovernmental entities, was the key to understanding the havoc diseases can create. And he was leveraging early civilian access to the internet to do it. The site was established and scored its momentous early success exposing SARS all before Twitter launched and Facebook opened to the general public in 2006, and before the first iPhone went on sale in 2007.

The arrival of social media made it possible to instantly share information on all kinds of emergencies, from the Arab Spring to the Fukushima nuclear disaster to the Ebola epidemic in West Africa, and many accounts built audiences and monetization by conveying real-time alerts on arrays of subjects, often with no sourcing attached. The speed of Twitter (now known as X) could make ProMED’s careful verification look slow; though the organization pushed its content to its own Twitter account, those posts would often arrive after a breaking-news account got there first.

That left the site in a battle for funding. Its online host ISID lost revenue during the pandemic, as professionals stayed home from the conferences it had hosted. Internally, money began to dry up. One of the complaints aired in the open letter is that payments to the moderators, who receive a small stipend, are already in arrears and will be delayed for two more months.

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

“We are really up against a challenge of long-term, sustainable funding for operating ProMED,” says ISID’s CEO, Linda MacKinnon, who described the organization as sipping from project grants to keep core operations going on a budget of about $1 million a year. (MacKinnon spoke after the July 14 announcement but before the open letter was published.) “We have sort of grown organically over the years, from project to project that were all cobbled together, but not stepping back and putting together a business case of how to sustain, how to innovate. We have found ourselves partnering or collaborating with hospitals and academic institutions, but [not finding a] long-term home.”

Hanson, who published the post outlining the changes, told WIRED by email Friday evening: “Not a single entity has stepped forward with any type of funding to allow ProMED to continue to operate as it has for 28 years, which is to say open and free to the public. We have diligently pursued funding and messaged our plan for the past year and made our financial situation widely known.” He added, “Funders are primarily interested in the latest and greatest tools, so from their strategic perspective there's little value in ProMED—an aging but highly effective email surveillance system—to show to their leadership/benefactors.”

A deeper look at recent history shows that the battle over ProMED is not only about money, no matter how critical that might be. After Woodall, ProMED was led for years by Larry Madoff, an infectious disease physician and professor at the University of Massachusetts Medical School who built a wide network of collaborators. Madoff was abruptly dismissed by ISID two years ago, and both he and moderators who worked with him say they do not know why. MacKinnon will only say the action was “a board decision.” Madoff held the title of editor in chief; according to the site’s team listings, that title is not now in use.

Asked for comment, Madoff said this: “ProMED is a public good, and it ought to be freely available and remain so. It would be a shame if it lost large segments of its audience, many of whom are in low-resource settings, because of a failure of the parent organization to adequately provide resources.” He added: “Losing subscribers will hobble ProMED because it depends on its readers to send information. By not having that big subscriber base, by restricting your base through a paid model, you’re going to lose that.”

In 2020, Madoff told WIRED the site’s subscriber base was about 83,000 addresses (which cannot now be confirmed), whereas MacKinnon’s team set the current count at about 20,000. The open letter, among other demands, asks ISID to “ensure the administrative and editorial independence of ProMED's content and subscription policies. This could largely be accomplished by restoring a true Editor-in-Chief position with independent executive authority.”

WIRED reached out to all 21 signatories of the open letter to verify that it is authentic. As of Monday, six—Marjorie P. Pollack, Leo Liu, Maria Jacobs, Martin Hugh-Jones, Pablo M. Beldomenico, and Thomas Yuill—confirmed that it represents their views. “In the first six months of Covid, I averaged three hours of sleep a night,” says Pollack, an infectious disease physician who first joined the site in 1997, and wrote the December 30, 2019 post that first flagged the emergence of Covid. “We have been a collegial group of people, and we understood that ProMED represented a labor of love.”

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

Asked for comment on the open letter, MacKinnon emailed a statement Friday afternoon that was also posted to the ProMED site. ”We recognize that members of the ProMED community are concerned about the continuation of the platform,” it says in part. “We also know that we could have communicated changes more clearly to the community and apologize for any confusion and distress caused.” The statement went on to enumerate the site’s financial challenges and ended with a plea for “unrestricted operational funding and investment.”

The irony is that ProMED may have run out of runway just as past obstacles to its growth begin to evaporate. Unmeasured but apparently substantial portions of medical and public health users have departed Twitter following the shifts in its ownership and politics, and none of its replacements—Mastodon, Bluesky, Threads, or others—have accumulated the velocity or density to match. That could allow a revived ProMED to reestablish its utility as a trusted source that deserves broader support. But as even ProMED insiders acknowledge, that will need some kind of partner. Last week, supporters said they were hoping to lobby major public health graduate schools, or even the WHO’s new Hub for Pandemic and Epidemic Intelligence, based in Berlin, to lend ProMED financial support or a new institutional home.

“ProMED needs to be saved,” McNabb says. “We can move it into an academic setting, or into a broader context like a WHO collaborating center—wherever people feel comfortable and it can be funded appropriately. But we need to save it. It’s too important for public health.”

Updated 8-7-2023 6:15 PM ET: This story was updated to add to the tally of open letter signatories who confirmed their participation to WIRED.

Related Articles

Latest Articles