Dr. B and the unbundling of patient data

Or: how a sans serif font + a vaccine panic convinced millions to give up sensitive data

At the beginning of the COVID-19 pandemic, I wrote a lot about the vaccine and the vaccine roll-out. To me, it was a fascinating test case for the U.S.’s science and public health infrastructure. In some ways, we came out far ahead of what I anticipated—I received my first dose of the vaccine by the end of March. By the time the Duke and Duchess of Cambridge, presumably closer to the front of the line than the average person, got their shots last month, everyone I knew in the U.S. who wanted a vaccine had gotten it.

At the same time, there were obvious shortcomings: the vaccine roll-out was overly politicized by the right, and—more importantly—not messaged enough to groups with good reason to be skeptical of the medical establishment.

But now that the roll-out has reached an equilibrium of sorts—there's always more vaccination to be done, but cases have declined to a point that people feel comfortable largely going back to normal—it’s interesting to look back on particularly weird moments of the vaccine roll-out and what that might mean for the future of healthcare.

One of those weird moments was highlighted last week in a MIT Technology Review article: the vaccine waitlist known as Dr. B.

Any port in a storm

Dr. B, which appeared early during the vaccine rollout, offered a quick online form you could fill out with name, age, location, and personal health information to determine which vaccination group you fell in. The promise was that Dr. B would notify you of any leftover doses in your area. 

Dr. B was one of several sites and Twitter bots that performed similar functions, notifying those eligible for a vaccine that an appointment was available. As you may recall, the demand for vaccines initially far outstripped the supply. Add in Twitter rumors of wasted doses, and anecdotes of people receiving their dose when they happened to be in the right place at the right time, and...I’ve never been so frustrated. I clearly wasn’t alone.

It’s also worth remembering that, at least for people who are very online, very into healthcare, and extra-concerned about COVID due to a preexisting condition (me), trying to source a vaccine was such a helter-skelter crowdsourced game that any weird link suddenly looked good. At one point I was sent a link that sent me, somehow, behind the login screen for Kaiser Permanente employees, allowing me to sign up for a vaccine as if I were a KP nurse. I thought about trying to go through with the appointment but my sense of morality prevailed (just barely). 

Even those better connected than me had trouble navigating the confusing web of vaccines, especially if they fell outside the imagined average vaccine recipient for whom the websites were designed.

Into this void stepped Dr. B. Compared to public health sites and Giant’s vaccine page, Dr. B offered a comfortably familiar DTC-style font and layout.

When a friend sent me the Dr. B link, I signed up instantly. I had filled out so many forms with my name, age, location, and “preexisting autoimmune condition, other” that Dr. B was just one of many.

Then I found a vaccine appointment thanks to a DC vaccine-sourcing Facebook group (internet communities can be amazing) and forgot all about Dr. B.

According to the MIT Tech Review, I was not the only one. In fact, almost 2.5 million people signed up for Dr. B, likely making it one of the largest—if not the largest—vaccine waitlists in the country.

And then, it seems, Dr. B failed to get anyone a vaccine.

When MIT Tech Review tried to interview the founder of Dr. B, who is also the former CEO of ZocDoc, he joined the interview with at least one crisis communications professional. When MIT Tech Review started asking questions about how many people received a vaccine dose through Dr. B and what Dr. B planned to do with the data, the founder abruptly ended the interview.

Selling vaccine waitlists

I’m sympathetic to founders of healthcare companies feeling uncomfortable when they’re asked about data. There’s a well-documented gap between how much people think they care about their data vs. their actions when they’re given an opportunity to give up some data in return for a free service. For example, I rigorously check location tracking services, I monitor which sites have my email address, I try to keep my data close to the vest—and then I instantly told a form of unknown provenance that I had an autoimmune disease for a chance at a vaccine dose.

A vaccine sign-up form turns out to be a genius way to acquire a list of all the people with autoimmune conditions within certain zip codes, along with their age and other demographics. These, I’m sure, are extremely valuable lists for payors and pharmaceutical companies.

Dr. B might be the only entity with this data, and—because they’re not shutting down like other, smaller waitlists did—they’re all but certainly about to sell it.

Unbundling patient data

MIT Tech Review makes the solid point that the Dr. B situation is emblematic of the U.S.’s general shift from public health infrastructure to a patchwork of private companies plugging the gaps.

While true, that’s not the part I can’t stop thinking about. I can’t get over the idea that Dr. B managed to get all of our data because it went viral. And I keep wondering if the founder, who previously ran the consumer-facing doctor appointment portal ZocDoc, did that on purpose. Obviously any company would be delighted to go viral, I’m not saying they shouldn’t, but I keep wondering if Dr. B was designed with this end state in mind, rather than pivoting after failing to connect patients to vaccine appointments.

Either way, what a stunning psychological experiment. After being primed for it with safe government websites, we all gave up our personal health data with absolutely no forethought to a company that has far from the most transparent intentions.

And, as Jim Barksdale said, if the only ways to make money are bundling and unbundling, the Dr. B situation seems a harbinger that medical data is rapidly unbundling from its former owners (primarily hospitals and payors). 

(Further convincing me that we’re in an unbundling phase, Nikhil Krishnan recently published a good piece about another side of patient data—when to release medical records to patients. He got a variety of responses, all of which are worth reading in full, but the majority seemed to hedge on the side of sharing more patient data with patients faster.)

The upside of unbundling medical data is that it might actually become useful, rather than being locked away in outdated software, siloed in competing institutions. The downside is that medical data enters a phase where companies like Dr. B feel comfortable selling vaccine waitlist data to clinical trial companies.

Eventually, there will be a company that steps even further outside the bounds of acceptability than Dr. B, and public outcry will lead to some kind of new policy around patient data. We'll find ourselves back in a bundling cycle. Until then, I guess, don’t trust vaccine waitlist sites just because they have a sans serif font.

This information shouldn’t be taken as investment advice (obviously), and the opinions expressed are entirely my own, not representative of my employer or anyone else.