Information chaos in public health

SCROLLING THROUGH Facebook today, I came across a new website that helps people find and order in-stock home COVID tests on line.  It’s updated to show current availability from a number of test suppliers.  What a brilliant idea!

For the past few weeks, my neighborhood Facebook feed has been buzzing with variations on a theme:  Does anyone know where I can find a COVID test for my kid/parent/self so I can go to school/hug my mom/travel?  Followed by – yes!  Just saw them at Walgreen’s in Arlington/CVS in Bedford/Walmart on line.  And inevitably the end of the story is – by the time I got there, the tests were gone.  And sometimes a coda:  Try logging on to the (pick a store) website at 5 a.m. or 7 p.m. or Thursdays.  It’s eerily reminiscent of the mad and frustrating scramble to find open slots when the vaccines first came out.

But that was nearly a year ago – and here we are.  We’re still relying on individuals to figure out how to keep themselves and their families – and their communities – safe.  And more than that, we are relying on luck.  I think about the chain of events and lucky breaks that led me to the test finder site today.  I have a doctor friend who’s been writing weekly sensible and well-informed COVID updates since the pandemic began.  She learned about the site through an email from a stranger that was buried in her spam folder.  I happened to be taking a break when she posted it.  Otherwise, I wouldn’t know about it.

And we’re relying on more than individual luck.  The chain of events that led me to find the site just isn’t universally available.  I have time to surf social media.  I am digitally literate and I have devices and Wi-Fi, and, if I didn’t, I could use minutes on my phone.  I have the training to know whom I trust to provide reliable information about COVID.  I don’t need a test right away.  Time, digital access, health literacy, and English fluency are not available to everyone.  If we didn’t know that before, the pandemic has pointed it out many times over.

On the other side of the equation, the test finder site was built by an enterprising teenager in Illinois who built a vaccine finder site a year ago.  It’s similar to the vaccine finder site built by another individual who saw a problem and knew it was solvable:  a Massachusetts programmer who was home on maternity leave back in February 2021.  Kudos to them and to all the other dedicated people volunteering their time and energy to help us all try to stay healthy.  But relying on individuals to step up to develop these resources, and relying on luck and a good internet connection to tell people about them, is deeply unsettling.

As a first-year graduate student, I learned that one of the basic functions of government is to correct so-called “market failures” – where even a well-functioning economy leaves important gaps.  “Imperfect information” is a classic market failure.  Knowing where to get a vaccine, or a home test, or what kind of mask to use and where to find one that isn’t counterfeit or overpriced, is critical information these days.  This is exactly what our state, and ideally national, public health agencies should be producing.

Imagine how reassuring and helpful it would be to have centralized, organized, accurate, timely, and easy-to-use resources to help us navigate the ever-changing landscape of COVID and the tools to keep it at bay.  Imagine that it’s guided by reliable information about which tests and masks work, how to get them, and how to use them.  Imagine that it’s available for free, in multiple languages, at accessible reading levels.   Imagine that it’s publicized everywhere from social media to community centers to health care provider and school and municipal websites.  Wouldn’t we all breathe a big sigh of relief?  And even better, wouldn’t we be more likely to get and use the tests, masks, and other strategies to protect ourselves and our communities?

Instead, we have to fend for ourselves, and when we do get information from public health authorities it’s often confusing or incomplete.  The CDC’s latest isolation and quarantine guidelines have generated thousands of memes, many hilarious, like “the CDC says you can now run with scissors” or “the CDC said just wear jeans and a cute top” or, most poignantly, “the CDC recommends you wake in the morning and you step outside and you take a deep breath and you get real high and you scream at the top of your lungs WHAT’S GOING ON.”

This information chaos reflects deeper and even more troubling public health failures – the politicization of vaccines and masks, the lack of preventive supplies and organized distribution channels, and mistrust of government even among people who desperately want its guidance.  But against that backdrop, the need for an objective, comprehensive, useful, and user-friendly information broker is even more essential.

A well-worn cliché reminds us that “hope is not a strategy.”  Neither is luck – especially not when lives are at stake.  It’s time for our leaders to step up.

Alexandra Schweitzer is a senior fellow at Harvard Kennedy School and a consultant in integrated social and medical care management. She lives in Lexington.