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Vaccine waitlist Dr. B collected data from millions. But how many did it help?

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Vaccine waitlist Dr. B collected data from millions. But how many did it help?


The company has continued to promote the idea of a nationwide service, with online posts claiming the service “is available in all 50 states.” When asked exactly how large its network is, Massoumi told MIT Technology Review that Dr. B does not have nationwide coverage but has around 600 vaccination partners across 37 states—although the company declined to say who they are, or which states it is active in. And those partnerships do not include national-level agreements with major chains such as CVS or Walgreens, which both said they were not working with Dr. B at a corporate level, though Massoumi says some individual stores are Dr. B providers. Six hundred partners may seem extensive, but it accounts for less than 1% of the more than 80,000 US vaccination sites tracked by the CDC. 

Dr. B’s limited presence may come as a surprise, given its founder’s experience in digital health services. Massoumi previously cofounded Zocdoc, a popular online appointment search and booking site, and served as its CEO. He left Zocdoc in 2015 and went on to start Shadow, an app that helps reunite lost pets with their owners. While Dr. B—which Massoumi says he is funding himself—does not charge either users or partners for its services, it now has at least 56 employees, including a team of 30 organizers, most with a background in politics. In February it expanded even further, acquiring another waitlisting service, Vax Standby.

Despite this heavy investment, however, Dr. B’s footprint is apparently so small that Claire Hannan, the executive director of the Association of Immunization Managers, which represents and coordinates state vaccine campaigns across the entire country, says she was not even aware of Dr. B until she was interviewed for this story. In fact, says Hannan, the entire idea of a digitized waitlisting service is one that overwhelmed vaccination sites would have found hard to adopt.

“Getting providers to use a new reporting system or a new scheduling system, a new IT interface—that’s much more of a challenge than getting them to agree to accept and give the vaccine,” she says.

Private data vs. public health

Dr. B is one of many private efforts that we’ve seen emerge to fill the gaps in America’s health system, from the private covid-19 testing sites that have overtaken strip malls to health-care tech companies entrusted to schedule vaccine appointments. With all these developments, it’s become harder for consumers and patients to differentiate between public pandemic response and for-profit entities. Crowdsourced resource lists regularly mention Dr. B’s waitlist signup, for example, alongside official public health websites, the federally operated Vaccines.gov, notices from health-care providers, and other medical services.

But public health departments and private companies have different reasons for existing, even if the stated missions sound similar.

“The incentives are the opposite,” says Elizabeth Renieris, a tech and human rights fellow at the Harvard Kennedy School’s Carr Center. “Public health and public interest concerns traditionally are not driven by profit or growth, or speed or efficiency, or any of those values.”

“The famous saying in business is, if you’re not paying, you’re the product,” says Kayte Spector-Bagdady, associate director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. “Weight tracker apps will help you track your weight, or fertility applications will help track your cycle. But the business model is really being able to sell that data out the back end.”

There are rules in place under HIPAA, the Health Insurance Portability and Accountability Act, intended to stop oversharing of health data. But if a company is not one of the “covered entities,” then the rules don’t apply, and there is a well-established business model for private health companies that relies on collecting consumer health data and selling it or sharing it with third parties. 

“The vast majority of these private-sector companies providing these tools are not going to be HIPAA-covered entities,” Renieris says. “It’s this displacement of the public interest by the private sector.”

Because Dr. B itself does not provide care, it is one of those entities not covered by HIPAA, and the data it collects falls outside the law’s protections. That means when people sign up for Dr. B’s services, their health information is not protected by HIPAA, but by whatever is outlined in the site’s privacy policy.

The FAQ section of Dr. B’s website says that thanks to its staff’s “decades” of experience dealing with HIPAA, it voluntarily adheres to those standards when storing and sharing user data, including encrypting the information. And its privacy policy does lay out some comprehensive-sounding protections. The website says it does not sell information that would identify people, and only shares users’ personal information with providers once they’ve opted in to receive a vaccine nearby. It also gives users the option to request that their personal data be deleted by sending a sequence of text messages to the service (although that fact is found halfway down the privacy policy page, and couched in legalese). 

But the policy also gives Dr. B the right to use personal data internally for purposes other than vaccinations and, if the company gets bought, to transfer the data to the new owner. The company declined to say what happens to information from users who opt out of vaccine notifications, and its policy is equally silent on the issue.

Such collected information can be lucrative. The zip code you live in and whether you have asthma can be valuable for advertisers marketing treatments; private or industry-sponsored researchers looking to recruit study participants might want a list of people with autoimmune disorders. And though many Americans are used to giving up data in the age of invasive tracking by tech giants, Spector-Bagdady says health data is different from, say, information on what kinds of clothes you like to wear.

“There are only so many pairs of mom jeans that I can purchase, but if you have health data from millions of people who have insurance, to whom you can advertise and target very expensive drugs that the insurance will cover, then you’re into some really profitable areas in terms of drug development, drug marketing, algorithmic and machine-learning developments,” she says.

Some Dr. B users I spoke to said that they expect information about themselves to be shared among private companies. But others said they were so desperate to protect themselves and loved ones that they didn’t even consider what information they were handing over when they signed up.

Renieris says it’s hard enough in normal times to ask people to investigate every digital interaction to make sure they know what they’re signing up for and who they’re giving their data to. Add in the fear and urgency of a pandemic and it’s even more of a burden on the consumer. 

“You begin to sign up for anything at that stage,” says Menendez, the Facebook group administrator. “I think that logic kind of goes out of the window.”

Going straight to the source

Without any evidence that Dr. B was successfully rerouting leftover doses, I still had questions, so I contacted the company to organize a conversation with its founder. 

On May 17, I interviewed Massoumi over Google Meet. He was accompanied by his communications team, including at least one representative from a public relations firm specializing in crisis communications. During the course of our conversation, Massoumi talked about learning from Dr. B’s “highly scalable” system and said that the company had a commitment to equitable distribution of vaccines, but he refused to say how many patients had been vaccinated through Dr. B. 

While the company was happy to publish the number of signups it had on its website, he claimed that revealing vaccination numbers would violate user privacy.

Massoumi said Dr. B is committed to data privacy, reiterating the company’s claim that its staff’s previous experience with HIPAA means it understands how to protect user data. 

“Just because we’re not a covered entity under HIPAA doesn’t mean that we can’t hold our service providers to high standards of patient privacy,” he said. 

The company has already navigated the transfer of user data on at least one occasion. When Vax Standby, the competing covid-19 vaccine waitlist, announced it was ceasing operations and merging with Dr. B, Vax Standby’s founders publicly promised to keep user data separate and not to automatically place its subscribers on Dr. B’s waitlist. Massoumi said he respected Vax Standby’s move, but that it wasn’t ideal.

“I don’t think that was in the public health interest,” he said. “I think many of those people could have benefited from the platform that we built.” (He added that Vax Standby user data was eventually deleted without being transferred.)

Some Dr. B users had told me that data sharing was an issue for them only in hindsight. They said how panicked they had become as vaccination slots seemed nonexistent, and how little attention they paid to the personal information they were handing over. 

“I appreciate the fact that if perhaps an evil person was running this company, that they could do a lot of evil things in the world,” Massoumi said. “I assure you, that’s not my reason for doing this.”

I asked Massoumi more questions about how desperation may have driven people to sign up for services without scrutinizing them. But he began discussing a different topic instead: the number of Americans who do not have health insurance. When pressed, Massoumi ended the conversation.

“I don’t have time to get into it with you,” he said before leaving the call.

“A bizarre attempt”

After our interview, I sent a list of 20 questions to Dr. B representatives to request more information. My queries revolved around the company’s basic business model, its activities, and its privacy policies—and included a request for key details that Massoumi had earlier said he would provide.

Building new technologies is a hard job that has been dramatically complicated by the pandemic, but these were typical questions about its operations that any startup might expect. We asked how many vaccine notifications the company had sent out; how many people had received a vaccine through the service; and whether it had consulted with health-care providers about the service’s usefulness. We also asked what the business model for this free service was, and whether it would seek outside funding in the future.

Dr. B refused to share even basic information about its operations. Instead, the company sent back the following statement, claiming that our inquiries were a “bizarre attempt” to question Dr. B’s attempts to get people vaccinated. 

“Dr. B was created during the height of the covid-19 crisis with the clear mission to save lives by rapidly getting vaccines into as many arms as possible because too many vaccines go to waste,” it said. “This important effort reflects the need to make vaccine distribution efficient and equitable and meet the urgent needs of underserved communities to help bring the pandemic to an end. 

“We are proud to have helped nearly 2.5 million people sign up for notifications about immediately available vaccines through hundreds of providers nationwide. So we are entirely flummoxed by this bizarre attempt to treat such a civic-minded endeavor as anything other than a genuine and committed effort to remove barriers that prevent people from getting vaccinated.

“From day one we understood the importance of protecting users’ data and that is why we have developed robust policies and practices to keep their information private and secure. Our privacy policy makes it clear that user data is never rented, sold or shared with any third party inappropriately. As a completely opt-in service, users have the ability to permanently delete their data from Dr. B at any time.”

Solving a temporary problem?

There is no doubt that Dr. B tapped into a very real issue when it launched: at the time, finding an available appointment was impossible for all but the most internet savvy or well-connected. With so many people struggling to get a vaccine, even whispers of leftover doses that might be trashed were enough to cause anger and confusion.

Manual and digital systems started to proliferate to address the issue: pharmacies set up their own paper waitlists, and alongside Dr. B and Vax Standby, there were digital services like VaccinateCA, a crowdsourced effort to spot open slots in California, and TurboVax, a viral Twitter bot that shared available appointments online as they dropped.

For many people, stories of leftover—or, worse, wasted—vaccines were a particularly painful and visible example of health systems failing. But as vaccine supplies expanded, that moment quickly passed. Hannan, of the Association of Immunization Managers, says waste has actually been minimal compared with what’s accepted in other mass vaccination initiatives. The federal Vaccines for Children program, which provides kids with shots regardless of their family’s ability to pay, has an expected wastage rate of 5%, she says. Data about covid vaccines obtained by Kaiser Health News, meanwhile, show that the CDC recorded 182,874 covid vaccines thrown out in the first three months vaccinations were available—just 0.1% of the more than 147.6 million doses administered as of March 30. According to CDC data, 70% of recorded covid-19 vaccine wastage happened at CVS and Walgreens—both companies that confirmed they have no national-level partnerships with Dr. B.

As vaccines have grown easier to access, some broker services have shuttered. Cities like Philadelphia are asking residents to take themselves off local lists, and TurboVax, the Twitter bot, announced on May 11 that it was winding down.

The willingness of people to help strangers find vaccines—like Joanie Schaffer, the volunteer who tried using Dr. B to help people in New York, and other community efforts—has been a small sliver of hope in an otherwise terrible year. And those who have benefited from such kindness have made their gratitude known. When TurboVax creator Huge Ma said he was closing the service, he was overwhelmed by thousands of tweets, retweets, and responses.

“Thank you for everything you did for the community,” said one follower. “Thank you for helping my wife and me get our first shots!” wrote another. (Indeed, TurboVax followers showed their appreciation by raising more than $200,000 for small businesses in New York’s Chinatown when Ma asked for help amid rising anti-Asian violence.)

I looked through Dr. B’s feed for similar expressions of thanks from grateful, vaccinated users, and found none. But unlike its peers, the company has no plans to shut down even though the appointment crunch has largely passed. Instead, Massoumi and the company say they are looking to what comes next. He says maybe they’ll collaborate with mobile vaccination clinics, or focus on booster shots. And now that the vaccination chaos has largely passed in the US? He wants to take Dr. B overseas. After all, he told me during our interview, the US effort has come so far. “We’ve touched millions of people,” he said.

This story is part of the Pandemic Technology Project, supported by The Rockefeller Foundation.



Tech

Investing in women pays off

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Investing in women pays off


“Starting a business is a privilege,” says Burton O’Toole, who worked at various startups before launching and later selling AdMass, her own marketing technology company. The company gave her access to the HearstLab program in 2016, but she soon discovered that she preferred the investment aspect and became a vice president at HearstLab a year later. “To empower some of the smartest women to do what they love is great,” she says. But in addition to rooting for women, Burton O’Toole loves the work because it’s a great market opportunity. 

“Research shows female-led teams see two and a half times higher returns compared to male-led teams,” she says, adding that women and people of color tend to build more diverse teams and therefore benefit from varied viewpoints and perspectives. She also explains that companies with women on their founding teams are likely to get acquired or go public sooner. “Despite results like this, just 2.3% of venture capital funding goes to teams founded by women. It’s still amazing to me that more investors aren’t taking this data more seriously,” she says. 

Burton O’Toole—who earned a BS from Duke in 2007 before getting an MS and PhD from MIT, all in mechanical engineering—has been a “data nerd” since she can remember. In high school she wanted to become an actuary. “Ten years ago, I never could have imagined this work; I like the idea of doing something in 10 more years I couldn’t imagine now,” she says. 

When starting a business, Burton O’Toole says, “women tend to want all their ducks in a row before they act. They say, ‘I’ll do it when I get this promotion, have enough money, finish this project.’ But there’s only one good way. Make the jump.”

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Preparing for disasters, before it’s too late

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Preparing for disasters, before it’s too late


All too often, the work of developing global disaster and climate resiliency happens when disaster—such as a hurricane, earthquake, or tsunami—has already ravaged entire cities and torn communities apart. But Elizabeth Petheo, MBA ’14, says that recently her work has been focused on preparedness. 

It’s hard to get attention for preparedness efforts, explains Petheo, a principal at Miyamoto International, an engineering and disaster risk reduction consulting firm. “You can always get a lot of attention when there’s a disaster event, but at that point it’s too late,” she adds. 

Petheo leads the firm’s projects and partnerships in the Asia-Pacific region and advises globally on international development and humanitarian assistance. She also works on preparedness in the Asia-Pacific region with the United States Agency for International Development. 

“We’re doing programming on the engagement of the private sector in disaster risk management in Indonesia, which is a very disaster-prone country,” she says. “Smaller and medium-sized businesses are important contributors to job creation and economic development. When they go down, the impact on lives, livelihoods, and the community’s ability to respond and recover effectively is extreme. We work to strengthen their own understanding of their risk and that of their surrounding community, lead them through an action-planning process to build resilience, and link that with larger policy initiatives at the national level.”

Petheo came to MIT with international leadership experience, having managed high-profile global development and risk mitigation initiatives at the World Bank in Washington, DC, as well as with US government agencies and international organizations leading major global humanitarian responses and teams in Sri Lanka and Haiti. But she says her time at Sloan helped her become prepared for this next phase in her career. “Sloan was the experience that put all the pieces together,” she says.

Petheo has maintained strong connections with MIT. In 2018, she received the Margaret L.A. MacVicar ’65, ScD ’67, Award in recognition of her role starting and leading the MIT Sloan Club in Washington, DC, and her work as an inaugural member of the Graduate Alumni Council (GAC). She is also a member of the Friends of the MIT Priscilla King Gray Public Service Center.

“I believe deeply in the power and impact of the Institute’s work and people,” she says. “The moment I graduated, my thought process was, ‘How can I give back, and how can I continue to strengthen the experience of those who will come after me?’”

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The Download: a curb on climate action, and post-Roe period tracking

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The US Supreme Court just gutted the EPA’s power to regulate emissions


Why’s it so controversial?: Geoengineering was long a taboo topic among scientists, and some argue it should remain one. There are questions about its potential environmental side effects, and concerns that the impacts will be felt unevenly across the globe. Some feel it’s too dangerous to ever try or even to investigate, arguing that just talking about the possibility could weaken the need to address the underlying causes of climate change.

But it’s going ahead?: Despite the concerns, as the threat of climate change grows and major nations fail to make rapid progress on emissions, growing numbers of experts are seriously exploring the potential effects of these approaches. Read the full story.

—James Temple

The must-reads

I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology.

1 The belief that AI is alive refuses to die
People want to believe the models are sentient, even when their creators deny it. (Reuters)
+ It’s unsurprising wild religious beliefs find a home in Silicon Valley. (Vox)
+ AI systems are being trained twice as quickly as they were just last year. (Spectrum IEEE)

2 The FBI added the missing cryptoqueen to its most-wanted list
It’s offering a $100,000 reward for information leading to Ruja Ignatova, whose crypto scheme defrauded victims out of more than $4 billion. (BBC)
+ A new documentary on the crypto Ponzi scheme is in the works. (Variety)

3 Social media platforms turn a blind eye to dodgy telehealth ads
Which has played a part in the prescription drugs abuse boom. (Protocol)
+ The doctor will Zoom you now. (MIT Technology Review)

4 We’re addicted to China’s lithium batteries
Which isn’t great news for other countries building electric cars. (Wired $)
+ This battery uses a new anode that lasts 20 times longer than lithium. (Spectrum IEEE)
+ Quantum batteries could, in theory, allow us to drive a million miles between charges. (The Next Web)

5 Far-right extremists are communicating over radio to avoid detection
Making it harder to monitor them and their violent activities. (Slate $)
+ Many of the rioters who stormed the Capitol were carrying radio equipment. (The Guardian)

6 Bro culture has no place in space 🚀
So says NASA’s former deputy administrator, who’s sick and tired of misogyny in the sector. (CNN)

7 A US crypto exchange is gaining traction in Venezuela
It’s helping its growing community battle hyperinflation, but isn’t as decentralized as they believe it to be. (Rest of World)
+ The vast majority of NFT players won’t be around in a decade. (Vox)
+ Exchange Coinbase is working with ICE to track and identify crypto users. (The Intercept)
+ If RadioShack’s edgy tweets shock you, don’t forget it’s a crypto firm now. (NY Mag)

8 It’s time we learned to love our swamps
Draining them prevents them from absorbing CO2 and filtering out our waste. (New Yorker $)
+ The architect making friends with flooding. (MIT Technology Review) 

9 Robots love drawing too 🖍️
Though I’ll bet they don’t get as frustrated as we do when they mess up. (Input)

10 The risky world of teenage brains
Making potentially dangerous decisions is an important part of adolescence, and our brains reflect that. (Knowable Magazine)

Quote of the day

“They shamelessly celebrate an all-inclusive pool party while we can’t even pay our rent!”

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