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



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, 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.


The hunter-gatherer groups at the heart of a microbiome gold rush



The hunter-gatherer groups at the heart of a microbiome gold rush

The first step to finding out is to catalogue what microbes we might have lost. To get as close to ancient microbiomes as possible, microbiologists have begun studying multiple Indigenous groups. Two have received the most attention: the Yanomami of the Amazon rainforest and the Hadza, in northern Tanzania. 

Researchers have made some startling discoveries already. A study by Sonnenburg and his colleagues, published in July, found that the gut microbiomes of the Hadza appear to include bugs that aren’t seen elsewhere—around 20% of the microbe genomes identified had not been recorded in a global catalogue of over 200,000 such genomes. The researchers found 8.4 million protein families in the guts of the 167 Hadza people they studied. Over half of them had not previously been identified in the human gut.

Plenty of other studies published in the last decade or so have helped build a picture of how the diets and lifestyles of hunter-gatherer societies influence the microbiome, and scientists have speculated on what this means for those living in more industrialized societies. But these revelations have come at a price.

A changing way of life

The Hadza people hunt wild animals and forage for fruit and honey. “We still live the ancient way of life, with arrows and old knives,” says Mangola, who works with the Olanakwe Community Fund to support education and economic projects for the Hadza. Hunters seek out food in the bush, which might include baboons, vervet monkeys, guinea fowl, kudu, porcupines, or dik-dik. Gatherers collect fruits, vegetables, and honey.

Mangola, who has met with multiple scientists over the years and participated in many research projects, has witnessed firsthand the impact of such research on his community. Much of it has been positive. But not all researchers act thoughtfully and ethically, he says, and some have exploited or harmed the community.

One enduring problem, says Mangola, is that scientists have tended to come and study the Hadza without properly explaining their research or their results. They arrive from Europe or the US, accompanied by guides, and collect feces, blood, hair, and other biological samples. Often, the people giving up these samples don’t know what they will be used for, says Mangola. Scientists get their results and publish them without returning to share them. “You tell the world [what you’ve discovered]—why can’t you come back to Tanzania to tell the Hadza?” asks Mangola. “It would bring meaning and excitement to the community,” he says.

Some scientists have talked about the Hadza as if they were living fossils, says Alyssa Crittenden, a nutritional anthropologist and biologist at the University of Nevada in Las Vegas, who has been studying and working with the Hadza for the last two decades.

The Hadza have been described as being “locked in time,” she adds, but characterizations like that don’t reflect reality. She has made many trips to Tanzania and seen for herself how life has changed. Tourists flock to the region. Roads have been built. Charities have helped the Hadza secure land rights. Mangola went abroad for his education: he has a law degree and a master’s from the Indigenous Peoples Law and Policy program at the University of Arizona.

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The Download: a microbiome gold rush, and Eric Schmidt’s election misinformation plan



The Download: a microbiome gold rush, and Eric Schmidt’s election misinformation plan

Over the last couple of decades, scientists have come to realize just how important the microbes that crawl all over us are to our health. But some believe our microbiomes are in crisis—casualties of an increasingly sanitized way of life. Disturbances in the collections of microbes we host have been associated with a whole host of diseases, ranging from arthritis to Alzheimer’s.

Some might not be completely gone, though. Scientists believe many might still be hiding inside the intestines of people who don’t live in the polluted, processed environment that most of the rest of us share. They’ve been studying the feces of people like the Yanomami, an Indigenous group in the Amazon, who appear to still have some of the microbes that other people have lost. 

But there is a major catch: we don’t know whether those in hunter-gatherer societies really do have “healthier” microbiomes—and if they do, whether the benefits could be shared with others. At the same time, members of the communities being studied are concerned about the risk of what’s called biopiracy—taking natural resources from poorer countries for the benefit of wealthier ones. Read the full story.

—Jessica Hamzelou

Eric Schmidt has a 6-point plan for fighting election misinformation

—by Eric Schmidt, formerly the CEO of Google, and current cofounder of philanthropic initiative Schmidt Futures

The coming year will be one of seismic political shifts. Over 4 billion people will head to the polls in countries including the United States, Taiwan, India, and Indonesia, making 2024 the biggest election year in history.

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Navigating a shifting customer-engagement landscape with generative AI



Navigating a shifting customer-engagement landscape with generative AI

A strategic imperative

Generative AI’s ability to harness customer data in a highly sophisticated manner means enterprises are accelerating plans to invest in and leverage the technology’s capabilities. In a study titled “The Future of Enterprise Data & AI,” Corinium Intelligence and WNS Triange surveyed 100 global C-suite leaders and decision-makers specializing in AI, analytics, and data. Seventy-six percent of the respondents said that their organizations are already using or planning to use generative AI.

According to McKinsey, while generative AI will affect most business functions, “four of them will likely account for 75% of the total annual value it can deliver.” Among these are marketing and sales and customer operations. Yet, despite the technology’s benefits, many leaders are unsure about the right approach to take and mindful of the risks associated with large investments.

Mapping out a generative AI pathway

One of the first challenges organizations need to overcome is senior leadership alignment. “You need the necessary strategy; you need the ability to have the necessary buy-in of people,” says Ayer. “You need to make sure that you’ve got the right use case and business case for each one of them.” In other words, a clearly defined roadmap and precise business objectives are as crucial as understanding whether a process is amenable to the use of generative AI.

The implementation of a generative AI strategy can take time. According to Ayer, business leaders should maintain a realistic perspective on the duration required for formulating a strategy, conduct necessary training across various teams and functions, and identify the areas of value addition. And for any generative AI deployment to work seamlessly, the right data ecosystems must be in place.

Ayer cites WNS Triange’s collaboration with an insurer to create a claims process by leveraging generative AI. Thanks to the new technology, the insurer can immediately assess the severity of a vehicle’s damage from an accident and make a claims recommendation based on the unstructured data provided by the client. “Because this can be immediately assessed by a surveyor and they can reach a recommendation quickly, this instantly improves the insurer’s ability to satisfy their policyholders and reduce the claims processing time,” Ayer explains.

All that, however, would not be possible without data on past claims history, repair costs, transaction data, and other necessary data sets to extract clear value from generative AI analysis. “Be very clear about data sufficiency. Don’t jump into a program where eventually you realize you don’t have the necessary data,” Ayer says.

The benefits of third-party experience

Enterprises are increasingly aware that they must embrace generative AI, but knowing where to begin is another thing. “You start off wanting to make sure you don’t repeat mistakes other people have made,” says Ayer. An external provider can help organizations avoid those mistakes and leverage best practices and frameworks for testing and defining explainability and benchmarks for return on investment (ROI).

Using pre-built solutions by external partners can expedite time to market and increase a generative AI program’s value. These solutions can harness pre-built industry-specific generative AI platforms to accelerate deployment. “Generative AI programs can be extremely complicated,” Ayer points out. “There are a lot of infrastructure requirements, touch points with customers, and internal regulations. Organizations will also have to consider using pre-built solutions to accelerate speed to value. Third-party service providers bring the expertise of having an integrated approach to all these elements.”

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