Darius Tahir, Kaiser Health News

Heather Meador and Anna Herber-Downey use dating apps on the job – and their boss knows it.

Both are public health nurses employed by Linn County Public Health in eastern Iowa. They’ve learned that dating apps are the most efficient way to inform users that people they previously met on the sites may have exposed them to sexually transmitted infections.

A nationwide surge in STIs, also known as STDs – with reported cases of gonorrhea and syphilis increasing 10% and 7%, respectively, from 2019 to 2020, according to the Centers for Disease Control and Prevention – isn’t sparing Iowa. The duo has found that the telephone call, a traditional method of contact tracing, no longer works well.

“When I started 12 years ago, we called everyone,” said Ms. Meador, the county health department’s clinical branch supervisor. “It’s getting harder and harder to just call someone on the phone.”

Even texting is ineffective, they said. And people aren’t necessarily answering messages on Facebook. The dating apps are where they’re at.

Because many people are meeting sex partners online – via sites like Grindr or Snapchat, which are headquartered in West Hollywood and Santa Monica, Calif., respectively – contact tracers often don’t have much information to go on, just a screen name or a picture.

So, about a year ago, Ms. Meador and her colleagues got approval from their bosses at the local level to build profiles on the app, through which they can contact the sex partners of infected people.

Traditionally, contact tracers interview people infected with an STI about their recent encounters and then reach out to those partners to tell them about the potential exposure.

Linn County contact tracers use the apps throughout their workday. Grindr, in particular, relies on geolocation, showing users matches who are close by. So the tracers use the apps when they’re out and about, hoping to wander into the same neighborhoods as the person diagnosed with an STI. Sometimes users “tap” the contract tracers to see whether they’re interested – in dating, that is.

When the public health officials spot someone they’re looking for, they send a message asking for a call. It’s a successful method: Ms. Herber-Downey estimated they make an initial contact 75% of the time.

Linn County’s decision to move online comes as STI rates rise nationally, funding to fight them falls, and people adopt new technologies to meet people and seek fun. “STIs are increasing way faster than the funding we have,” said Leo Parker, director of prevention programs for the National Coalition of STD Directors, all while public health departments – many underfunded – are grappling with new behaviors.

“Social media companies have billions; we have tens of thousands,” said Jeffrey Klausner, MD, MPH, a University of Southern California, Los Angeles, public health professor, who previously served as San Francisco’s director of STD prevention and control services. That funding disparity means few public health departments have staff members who can go online. “It’s only really in major cities that they have anyone who’s tasked for that,” Dr. Klausner said.

Even when departments have enough employees to take on the challenge, institutional support can be lacking. Some public health officials question employees who log into the apps. Dr. Klausner once testified on behalf of a Ventura County, Calif., contact tracer who was fired for using sex sites for work.

But with people migrating online to meet partners, following them there makes sense. “We’re now in a digital age,” Mr. Parker said. Individuals might not be out, or might be questioning their identity, making online venues comfortable, anonymous spaces for romance – which, in turn, means people are harder to reach face-to-face, at least at first.

What’s more, online spaces like Grindr are effective public health tools beyond contact tracing. They can be useful ways to get the word out about public health concerns.

Mr. Parker and the Linn County officials said public service announcements on dating apps – advocating for condom use or sharing the business hours for sexual health clinics – do seem to lead people to services. “We do have individuals coming in, saying, ‘I saw you had free testing. I saw it on Grindr,’ ” Mr. Parker said.

Grindr, which touts itself as the biggest dating app focused on LGBTQ+ people, pushes out messages and information to its members, said Jack Harrison-Quintana, director of Grindr for Equality. That engagement intensified during a 2015 meningitis outbreak among LGBTQ+ communities in Chicago, for example.

During that outbreak, the app sent citywide messages about vaccination. Then Mr. Harrison-Quintana took advantage of the service’s design: Using the site’s geolocating capabilities, Grindr workers targeted messages to specific neighborhoods. “We could go in and really go block to block and say, ‘Is this where the cases are showing up?’ ” he said. If so, they sent more messages to that area.

That campaign encouraged further efforts from the app, which regularly sends public health messages about everything from COVID-19 to monkeypox to the platform’s base of roughly 11 million monthly users. Grindr also allows users to display their HIV status and indicate whether they’re vaccinated against COVID, monkeypox, and meningitis.

There are a couple of things Grindr won’t do, however. The company won’t allow public health departments to create institutional accounts. And it won’t allow automated notifications about STI exposures to be sent to users.

That’s due to privacy concerns, the company said, despite calls from public health advocates to deploy better messaging features. Grindr believes that a government presence on the app would be too intrusive and that even anonymous notifications would allow users to trace infections back to their source. (When asked about public health officials who join the site on their own, company spokesperson Patrick Lenihan said: “Individuals are free to say something like ‘I’m a public health professional – ask me about my work!’ in their profile and are free to discuss sexual and public health matters however they see fit.”)

Grindr’s position – however disappointing to some in the public health world – reflects a longtime balancing act attempted by the private sector, which aims to square government concerns with users’ privacy interests.

Dr. Klausner pointed to a 1999 syphilis outbreak in San Francisco as one of the first times he saw how those interests could be at odds. The outbreak was traced to an AOL chatroom. Based on his research, Dr. Klausner said it seemed as though people could go online and “get a sex partner faster than you can get a pizza delivered.”

But persuading New York–based Time Warner, eventually AOL’s corporate parent, to cooperate was time-intensive and tricky – gaining entrée into the chatroom required help from the New York attorney general’s office.

The online industry has advanced since then, Dr. Klausner said. He helped one service develop a system to send digital postcards to potentially exposed people. “Congratulations, you got syphilis,” the postcards read. “They were edgy postcards,” he said, although some options were less “snarky.”

Overall, however, the dating app world is still “bifurcated,” he said. For public health efforts, apps that appeal to LGBTQ+ users are generally more helpful than those that predominantly cater to heterosexual clients.

That’s due to the community’s history with sexual health, explained Jen Hecht, a leader of Building Healthy Online Communities, a public health group partnering with dating apps. “Folks in the queer community have – what – 30, 40 years of thinking about HIV?” she said.

Even though STIs affect everyone, “the norm and the expectation is not there” for straight-focused dating apps, she said. Indeed, neither Match Group nor Bumble – the corporations with the biggest apps focused on heterosexual dating, both based in Texas – responded to multiple requests for comment from KHN.

But users, at least so far, seem to appreciate the app-based interventions. Mr. Harrison-Quintana said Grindr has landed on a just-the-facts approach to conveying health information. He has never received any backlash, “which has been very nice.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Heather Meador and Anna Herber-Downey use dating apps on the job – and their boss knows it.

Both are public health nurses employed by Linn County Public Health in eastern Iowa. They’ve learned that dating apps are the most efficient way to inform users that people they previously met on the sites may have exposed them to sexually transmitted infections.

A nationwide surge in STIs, also known as STDs – with reported cases of gonorrhea and syphilis increasing 10% and 7%, respectively, from 2019 to 2020, according to the Centers for Disease Control and Prevention – isn’t sparing Iowa. The duo has found that the telephone call, a traditional method of contact tracing, no longer works well.

“When I started 12 years ago, we called everyone,” said Ms. Meador, the county health department’s clinical branch supervisor. “It’s getting harder and harder to just call someone on the phone.”

Even texting is ineffective, they said. And people aren’t necessarily answering messages on Facebook. The dating apps are where they’re at.

Because many people are meeting sex partners online – via sites like Grindr or Snapchat, which are headquartered in West Hollywood and Santa Monica, Calif., respectively – contact tracers often don’t have much information to go on, just a screen name or a picture.

So, about a year ago, Ms. Meador and her colleagues got approval from their bosses at the local level to build profiles on the app, through which they can contact the sex partners of infected people.

Traditionally, contact tracers interview people infected with an STI about their recent encounters and then reach out to those partners to tell them about the potential exposure.

Linn County contact tracers use the apps throughout their workday. Grindr, in particular, relies on geolocation, showing users matches who are close by. So the tracers use the apps when they’re out and about, hoping to wander into the same neighborhoods as the person diagnosed with an STI. Sometimes users “tap” the contract tracers to see whether they’re interested – in dating, that is.

When the public health officials spot someone they’re looking for, they send a message asking for a call. It’s a successful method: Ms. Herber-Downey estimated they make an initial contact 75% of the time.

Linn County’s decision to move online comes as STI rates rise nationally, funding to fight them falls, and people adopt new technologies to meet people and seek fun. “STIs are increasing way faster than the funding we have,” said Leo Parker, director of prevention programs for the National Coalition of STD Directors, all while public health departments – many underfunded – are grappling with new behaviors.

“Social media companies have billions; we have tens of thousands,” said Jeffrey Klausner, MD, MPH, a University of Southern California, Los Angeles, public health professor, who previously served as San Francisco’s director of STD prevention and control services. That funding disparity means few public health departments have staff members who can go online. “It’s only really in major cities that they have anyone who’s tasked for that,” Dr. Klausner said.

Even when departments have enough employees to take on the challenge, institutional support can be lacking. Some public health officials question employees who log into the apps. Dr. Klausner once testified on behalf of a Ventura County, Calif., contact tracer who was fired for using sex sites for work.

But with people migrating online to meet partners, following them there makes sense. “We’re now in a digital age,” Mr. Parker said. Individuals might not be out, or might be questioning their identity, making online venues comfortable, anonymous spaces for romance – which, in turn, means people are harder to reach face-to-face, at least at first.

What’s more, online spaces like Grindr are effective public health tools beyond contact tracing. They can be useful ways to get the word out about public health concerns.

Mr. Parker and the Linn County officials said public service announcements on dating apps – advocating for condom use or sharing the business hours for sexual health clinics – do seem to lead people to services. “We do have individuals coming in, saying, ‘I saw you had free testing. I saw it on Grindr,’ ” Mr. Parker said.

Grindr, which touts itself as the biggest dating app focused on LGBTQ+ people, pushes out messages and information to its members, said Jack Harrison-Quintana, director of Grindr for Equality. That engagement intensified during a 2015 meningitis outbreak among LGBTQ+ communities in Chicago, for example.

During that outbreak, the app sent citywide messages about vaccination. Then Mr. Harrison-Quintana took advantage of the service’s design: Using the site’s geolocating capabilities, Grindr workers targeted messages to specific neighborhoods. “We could go in and really go block to block and say, ‘Is this where the cases are showing up?’ ” he said. If so, they sent more messages to that area.

That campaign encouraged further efforts from the app, which regularly sends public health messages about everything from COVID-19 to monkeypox to the platform’s base of roughly 11 million monthly users. Grindr also allows users to display their HIV status and indicate whether they’re vaccinated against COVID, monkeypox, and meningitis.

There are a couple of things Grindr won’t do, however. The company won’t allow public health departments to create institutional accounts. And it won’t allow automated notifications about STI exposures to be sent to users.

That’s due to privacy concerns, the company said, despite calls from public health advocates to deploy better messaging features. Grindr believes that a government presence on the app would be too intrusive and that even anonymous notifications would allow users to trace infections back to their source. (When asked about public health officials who join the site on their own, company spokesperson Patrick Lenihan said: “Individuals are free to say something like ‘I’m a public health professional – ask me about my work!’ in their profile and are free to discuss sexual and public health matters however they see fit.”)

Grindr’s position – however disappointing to some in the public health world – reflects a longtime balancing act attempted by the private sector, which aims to square government concerns with users’ privacy interests.

Dr. Klausner pointed to a 1999 syphilis outbreak in San Francisco as one of the first times he saw how those interests could be at odds. The outbreak was traced to an AOL chatroom. Based on his research, Dr. Klausner said it seemed as though people could go online and “get a sex partner faster than you can get a pizza delivered.”

But persuading New York–based Time Warner, eventually AOL’s corporate parent, to cooperate was time-intensive and tricky – gaining entrée into the chatroom required help from the New York attorney general’s office.

The online industry has advanced since then, Dr. Klausner said. He helped one service develop a system to send digital postcards to potentially exposed people. “Congratulations, you got syphilis,” the postcards read. “They were edgy postcards,” he said, although some options were less “snarky.”

Overall, however, the dating app world is still “bifurcated,” he said. For public health efforts, apps that appeal to LGBTQ+ users are generally more helpful than those that predominantly cater to heterosexual clients.

That’s due to the community’s history with sexual health, explained Jen Hecht, a leader of Building Healthy Online Communities, a public health group partnering with dating apps. “Folks in the queer community have – what – 30, 40 years of thinking about HIV?” she said.

Even though STIs affect everyone, “the norm and the expectation is not there” for straight-focused dating apps, she said. Indeed, neither Match Group nor Bumble – the corporations with the biggest apps focused on heterosexual dating, both based in Texas – responded to multiple requests for comment from KHN.

But users, at least so far, seem to appreciate the app-based interventions. Mr. Harrison-Quintana said Grindr has landed on a just-the-facts approach to conveying health information. He has never received any backlash, “which has been very nice.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Heather Meador and Anna Herber-Downey use dating apps on the job – and their boss knows it.

Both are public health nurses employed by Linn County Public Health in eastern Iowa. They’ve learned that dating apps are the most efficient way to inform users that people they previously met on the sites may have exposed them to sexually transmitted infections.

A nationwide surge in STIs, also known as STDs – with reported cases of gonorrhea and syphilis increasing 10% and 7%, respectively, from 2019 to 2020, according to the Centers for Disease Control and Prevention – isn’t sparing Iowa. The duo has found that the telephone call, a traditional method of contact tracing, no longer works well.

“When I started 12 years ago, we called everyone,” said Ms. Meador, the county health department’s clinical branch supervisor. “It’s getting harder and harder to just call someone on the phone.”

Even texting is ineffective, they said. And people aren’t necessarily answering messages on Facebook. The dating apps are where they’re at.

Because many people are meeting sex partners online – via sites like Grindr or Snapchat, which are headquartered in West Hollywood and Santa Monica, Calif., respectively – contact tracers often don’t have much information to go on, just a screen name or a picture.

So, about a year ago, Ms. Meador and her colleagues got approval from their bosses at the local level to build profiles on the app, through which they can contact the sex partners of infected people.

Traditionally, contact tracers interview people infected with an STI about their recent encounters and then reach out to those partners to tell them about the potential exposure.

Linn County contact tracers use the apps throughout their workday. Grindr, in particular, relies on geolocation, showing users matches who are close by. So the tracers use the apps when they’re out and about, hoping to wander into the same neighborhoods as the person diagnosed with an STI. Sometimes users “tap” the contract tracers to see whether they’re interested – in dating, that is.

When the public health officials spot someone they’re looking for, they send a message asking for a call. It’s a successful method: Ms. Herber-Downey estimated they make an initial contact 75% of the time.

Linn County’s decision to move online comes as STI rates rise nationally, funding to fight them falls, and people adopt new technologies to meet people and seek fun. “STIs are increasing way faster than the funding we have,” said Leo Parker, director of prevention programs for the National Coalition of STD Directors, all while public health departments – many underfunded – are grappling with new behaviors.

“Social media companies have billions; we have tens of thousands,” said Jeffrey Klausner, MD, MPH, a University of Southern California, Los Angeles, public health professor, who previously served as San Francisco’s director of STD prevention and control services. That funding disparity means few public health departments have staff members who can go online. “It’s only really in major cities that they have anyone who’s tasked for that,” Dr. Klausner said.

Even when departments have enough employees to take on the challenge, institutional support can be lacking. Some public health officials question employees who log into the apps. Dr. Klausner once testified on behalf of a Ventura County, Calif., contact tracer who was fired for using sex sites for work.

But with people migrating online to meet partners, following them there makes sense. “We’re now in a digital age,” Mr. Parker said. Individuals might not be out, or might be questioning their identity, making online venues comfortable, anonymous spaces for romance – which, in turn, means people are harder to reach face-to-face, at least at first.

What’s more, online spaces like Grindr are effective public health tools beyond contact tracing. They can be useful ways to get the word out about public health concerns.

Mr. Parker and the Linn County officials said public service announcements on dating apps – advocating for condom use or sharing the business hours for sexual health clinics – do seem to lead people to services. “We do have individuals coming in, saying, ‘I saw you had free testing. I saw it on Grindr,’ ” Mr. Parker said.

Grindr, which touts itself as the biggest dating app focused on LGBTQ+ people, pushes out messages and information to its members, said Jack Harrison-Quintana, director of Grindr for Equality. That engagement intensified during a 2015 meningitis outbreak among LGBTQ+ communities in Chicago, for example.

During that outbreak, the app sent citywide messages about vaccination. Then Mr. Harrison-Quintana took advantage of the service’s design: Using the site’s geolocating capabilities, Grindr workers targeted messages to specific neighborhoods. “We could go in and really go block to block and say, ‘Is this where the cases are showing up?’ ” he said. If so, they sent more messages to that area.

That campaign encouraged further efforts from the app, which regularly sends public health messages about everything from COVID-19 to monkeypox to the platform’s base of roughly 11 million monthly users. Grindr also allows users to display their HIV status and indicate whether they’re vaccinated against COVID, monkeypox, and meningitis.

There are a couple of things Grindr won’t do, however. The company won’t allow public health departments to create institutional accounts. And it won’t allow automated notifications about STI exposures to be sent to users.

That’s due to privacy concerns, the company said, despite calls from public health advocates to deploy better messaging features. Grindr believes that a government presence on the app would be too intrusive and that even anonymous notifications would allow users to trace infections back to their source. (When asked about public health officials who join the site on their own, company spokesperson Patrick Lenihan said: “Individuals are free to say something like ‘I’m a public health professional – ask me about my work!’ in their profile and are free to discuss sexual and public health matters however they see fit.”)

Grindr’s position – however disappointing to some in the public health world – reflects a longtime balancing act attempted by the private sector, which aims to square government concerns with users’ privacy interests.

Dr. Klausner pointed to a 1999 syphilis outbreak in San Francisco as one of the first times he saw how those interests could be at odds. The outbreak was traced to an AOL chatroom. Based on his research, Dr. Klausner said it seemed as though people could go online and “get a sex partner faster than you can get a pizza delivered.”

But persuading New York–based Time Warner, eventually AOL’s corporate parent, to cooperate was time-intensive and tricky – gaining entrée into the chatroom required help from the New York attorney general’s office.

The online industry has advanced since then, Dr. Klausner said. He helped one service develop a system to send digital postcards to potentially exposed people. “Congratulations, you got syphilis,” the postcards read. “They were edgy postcards,” he said, although some options were less “snarky.”

Overall, however, the dating app world is still “bifurcated,” he said. For public health efforts, apps that appeal to LGBTQ+ users are generally more helpful than those that predominantly cater to heterosexual clients.

That’s due to the community’s history with sexual health, explained Jen Hecht, a leader of Building Healthy Online Communities, a public health group partnering with dating apps. “Folks in the queer community have – what – 30, 40 years of thinking about HIV?” she said.

Even though STIs affect everyone, “the norm and the expectation is not there” for straight-focused dating apps, she said. Indeed, neither Match Group nor Bumble – the corporations with the biggest apps focused on heterosexual dating, both based in Texas – responded to multiple requests for comment from KHN.

But users, at least so far, seem to appreciate the app-based interventions. Mr. Harrison-Quintana said Grindr has landed on a just-the-facts approach to conveying health information. He has never received any backlash, “which has been very nice.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Many Americans turn to the latest big idea to lose weight – fad diets, fitness crazes, dodgy herbs and pills, bariatric surgery, just to name a few. They’re rarely the magic solution people dream of.

Now a wave of startups offer access to a new category of drugs coupled with intensive behavioral coaching online. But already concerns are emerging.

These startups, spurred by hundreds of millions of dollars in funding from blue-chip venture capital firms, have signed up well over 100,000 patients and could reach millions more. These patients pay hundreds, if not thousands, of dollars to access new drugs, called glucagonlike peptide–1 (GLP-1) agonists, along with online coaching to encourage healthy habits.

The startups initially positioned themselves in lofty terms. “This is the last weight-loss program you’ll try,” said a 2020 marketing analysis by startup Calibrate Health, in messaging designed to reach one of its target demographics, the “working mom.” (Company spokesperson Michelle Wellington said the document does not reflect Calibrate’s current marketing strategy.)

But while doctors and patients are intrigued by the new model, some customers complain online that reality is short of the buildup: They say they got canned advice and unresponsive clinicians – and some report they couldn’t get the newest drugs.

Calibrate Health, a New York City–based startup, reported earlier in 2022 it had served 20,000 people. Another startup, Found, headquartered in San Francisco, has served 135,000 patients since July 2020, CEO Sarah Jones Simmer said in an interview. Calibrate costs patients nearly $1,600 a year, not counting the price of drugs, which can hit nearly $1,500 monthly without insurance, according to drug price savings site GoodRx. (Insurers reimburse for GLP-1agonists in limited circumstances, patients said.) Found offers a 6-month plan for nearly $600, a company spokesperson said. (That price includes generic drugs, but not the newer GLP-1 agonists, like Wegovy.)

The two companies are beneficiaries of over $200 million in combined venture funding, according to tracking by Crunchbase, a repository of venture capital investments. The firms say they’re on the vanguard of weight care, both citing the influence of biology and other scientific factors as key ingredients to their approaches.

There’s potentially a big market for these startups. Just over 4 in 10 Americans are obese, according to the Centers for Disease Control and Prevention, driving up their risk for cardiovascular conditions and type 2 diabetes. Effective medical treatments are elusive and hard to access.

Centers that provide this specialty care “are overwhelmed,” said Fatima Stanford, MD, an obesity medicine specialist at Massachusetts General in Boston, a teaching hospital affiliated with Harvard. Her own clinic has a wait list of 3,000.

Dr. Stanford, who said she has advised several of these telemedicine startups, is bullish on their potential.

Scott Butsch, MD, director of obesity medicine at the Cleveland Clinic, said the startups can offer care with less judgment and stigma than in-person peers. They’re also more convenient.

Dr. Butsch, who learned about the model through consultancies, patients, and colleagues, wonders whether the startups are operating “to strategically find which patients respond to which drug.” He said they should coordinate well with behavioral specialists, as antidepressants or other medications may be driving weight gain. “Obesity is a complex disease and requires treatments that match its complexity. I think programs that do not have a multidisciplinary team are less comprehensive and, in the long term, less effective.”

The startups market a two-pronged product: first, the new class of GLP-1 agonists. While these medications are effective at provoking weight loss, Wegovy, one of two in this class specifically approved for this purpose, is in short supply because of manufacturing difficulties, according to its maker, Novo Nordisk. Others in the category can be prescribed off label. But doctors generally aren’t familiar with the medications, Stanford said. In theory, the startups can bridge some of those gaps: They offer more specialized, knowledgeable clinicians.

Then there’s the other prong: behavioral changes. The companies use televisits and online messaging with nutritionists or coaches to help patients incorporate new diet and exercise habits. The weight loss figures achieved by participants in clinical trials for the new drugs – up to 15% of body mass – were tied to such changes, according to Novo Nordisk.

Social media sites are bursting with these startups’ ads, everywhere from podcasts to Instagram. A search of Meta’s ad library finds 40,000 ads on Facebook and Instagram between the two firms.

The ads complement people’s own postings on social media: Numerous Facebook groups are devoted to the new type of drugs – some even focused on helping patients manage side effects, like changes in their bowel movements. The buzz is quantifiable: On TikTok, mentions of the new GLP-1 agonists tripled from last June to this June, according to an analysis by investment bankers at Morgan Stanley.

There’s now a feverish, expectant appetite for these medications among the startups’ clientele. Patients often complained that their friends had obtained a drug they weren’t offered, recalled Alexandra Coults, a former pharmacist consultant for Found. Ms. Coults said patients may have perceived some sort of bait-and-switch when in reality clinical reasons – like drug contraindications – guide prescribing decisions.

Patient expectations influence care, Ms. Coults said. Customers came in with ideas shaped by the culture of fad diets and New Year’s resolutions. “Quite a few people would sign up for 1 month and not continue.”

In interviews with KHN and in online complaints, patients also questioned the quality of care they received. Some said intake – which began by filling out a form and proceeded to an online visit with a doctor – was perfunctory. Once medication began, they said, requests for counseling about side effects were slow to be answered.

Jess Garrant, a Found patient, recalled that after she was prescribed zonisamide, a generic anticonvulsant that has shown some ability to help with weight loss, she felt “absolutely weird.”

“I was up all night and my thoughts were racing,” she wrote in a blog post. She developed sores in her mouth.

She sought advice and help from Found physicians, but their replies “weren’t quick.” Nonemergency communications are routed through the company’s portal.

It took a week to complete a switch of medications and have a new prescription arrive at her home, she said. Meanwhile, she said, she went to an urgent care clinic for the mouth sores.

Found frequently prescribes generic medications – often off label – rather than just the new GLP-1 agonists, company executives said in an interview. Found said older generics like zonisamide are more accessible than the GLP-1 agonists advertised on social media and their own website. Both Dr. Butsch and Dr. Stanford said they’ve prescribed zonisamide successfully. Dr. Butsch said ramping up dosage rapidly can increase the risk of side effects.

But Kim Boyd, MD, chief medical officer of competitor Calibrate, said the older drugs “just haven’t worked.”

Patients of both companies have critiqued online and in interviews the startups’ behavioral care – which experts across the board maintain is integral to successful weight loss treatment. But some patients felt they simply had canned advice.

Other patients said they had ups and downs with their coaches. Dana Crom, an attorney, said she had gone through many coaches with Calibrate. Some were good, effective cheerleaders; others, not so good. But when kinks in the program arose, she said, the coach wasn’t able to help her navigate them. While the coach can report trouble with medications or the app, it appears those reports are no more effective than messages sent through the portal, Ms. Crom said.

And what about when her yearlong subscription ends? Ms. Crom said she’d consider continuing with Calibrate.

Relationships with coaches, given the need to change behavior, are a critical element of the business models. Patients’ results depend “on how adherent they are to lifestyle changes,” said Found’s chief medical officer, Rehka Kumar, MD.

While the startups offer care to a larger geographic footprint, it’s not clear whether the demographics of their patient populations are different from those of the traditional bricks-and-mortar model. Calibrate’s patients are overwhelmingly White; over 8 in 10 have at least an undergraduate degree; and over 8 in 10 are women, according to the company.

And its earlier marketing strategies reflected that. The September 2020 “segmentation” document laid out three types of customers the company could hope to attract: perimenopausal or menopausal women, with income ranging from $75,000 to $150,000 a year; working mothers, with a similar income; and “men.”

Isabelle Kenyon, Calibrate’s CEO, said the company now hopes to expand its reach to partner with large employers, and that will help diversify its patients.

Patients will need to be convinced that the model – more affordable, more accessible – works for them. For her part, Ms. Garrant, who no longer is using Found, reflected on her experience, writing in her blog post that she was hoping for more follow-up and a more personal approach. “I don’t think it’s a helpful way to lose weight,” she said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Many Americans turn to the latest big idea to lose weight – fad diets, fitness crazes, dodgy herbs and pills, bariatric surgery, just to name a few. They’re rarely the magic solution people dream of.

Now a wave of startups offer access to a new category of drugs coupled with intensive behavioral coaching online. But already concerns are emerging.

These startups, spurred by hundreds of millions of dollars in funding from blue-chip venture capital firms, have signed up well over 100,000 patients and could reach millions more. These patients pay hundreds, if not thousands, of dollars to access new drugs, called glucagonlike peptide–1 (GLP-1) agonists, along with online coaching to encourage healthy habits.

The startups initially positioned themselves in lofty terms. “This is the last weight-loss program you’ll try,” said a 2020 marketing analysis by startup Calibrate Health, in messaging designed to reach one of its target demographics, the “working mom.” (Company spokesperson Michelle Wellington said the document does not reflect Calibrate’s current marketing strategy.)

But while doctors and patients are intrigued by the new model, some customers complain online that reality is short of the buildup: They say they got canned advice and unresponsive clinicians – and some report they couldn’t get the newest drugs.

Calibrate Health, a New York City–based startup, reported earlier in 2022 it had served 20,000 people. Another startup, Found, headquartered in San Francisco, has served 135,000 patients since July 2020, CEO Sarah Jones Simmer said in an interview. Calibrate costs patients nearly $1,600 a year, not counting the price of drugs, which can hit nearly $1,500 monthly without insurance, according to drug price savings site GoodRx. (Insurers reimburse for GLP-1agonists in limited circumstances, patients said.) Found offers a 6-month plan for nearly $600, a company spokesperson said. (That price includes generic drugs, but not the newer GLP-1 agonists, like Wegovy.)

The two companies are beneficiaries of over $200 million in combined venture funding, according to tracking by Crunchbase, a repository of venture capital investments. The firms say they’re on the vanguard of weight care, both citing the influence of biology and other scientific factors as key ingredients to their approaches.

There’s potentially a big market for these startups. Just over 4 in 10 Americans are obese, according to the Centers for Disease Control and Prevention, driving up their risk for cardiovascular conditions and type 2 diabetes. Effective medical treatments are elusive and hard to access.

Centers that provide this specialty care “are overwhelmed,” said Fatima Stanford, MD, an obesity medicine specialist at Massachusetts General in Boston, a teaching hospital affiliated with Harvard. Her own clinic has a wait list of 3,000.

Dr. Stanford, who said she has advised several of these telemedicine startups, is bullish on their potential.

Scott Butsch, MD, director of obesity medicine at the Cleveland Clinic, said the startups can offer care with less judgment and stigma than in-person peers. They’re also more convenient.

Dr. Butsch, who learned about the model through consultancies, patients, and colleagues, wonders whether the startups are operating “to strategically find which patients respond to which drug.” He said they should coordinate well with behavioral specialists, as antidepressants or other medications may be driving weight gain. “Obesity is a complex disease and requires treatments that match its complexity. I think programs that do not have a multidisciplinary team are less comprehensive and, in the long term, less effective.”

The startups market a two-pronged product: first, the new class of GLP-1 agonists. While these medications are effective at provoking weight loss, Wegovy, one of two in this class specifically approved for this purpose, is in short supply because of manufacturing difficulties, according to its maker, Novo Nordisk. Others in the category can be prescribed off label. But doctors generally aren’t familiar with the medications, Stanford said. In theory, the startups can bridge some of those gaps: They offer more specialized, knowledgeable clinicians.

Then there’s the other prong: behavioral changes. The companies use televisits and online messaging with nutritionists or coaches to help patients incorporate new diet and exercise habits. The weight loss figures achieved by participants in clinical trials for the new drugs – up to 15% of body mass – were tied to such changes, according to Novo Nordisk.

Social media sites are bursting with these startups’ ads, everywhere from podcasts to Instagram. A search of Meta’s ad library finds 40,000 ads on Facebook and Instagram between the two firms.

The ads complement people’s own postings on social media: Numerous Facebook groups are devoted to the new type of drugs – some even focused on helping patients manage side effects, like changes in their bowel movements. The buzz is quantifiable: On TikTok, mentions of the new GLP-1 agonists tripled from last June to this June, according to an analysis by investment bankers at Morgan Stanley.

There’s now a feverish, expectant appetite for these medications among the startups’ clientele. Patients often complained that their friends had obtained a drug they weren’t offered, recalled Alexandra Coults, a former pharmacist consultant for Found. Ms. Coults said patients may have perceived some sort of bait-and-switch when in reality clinical reasons – like drug contraindications – guide prescribing decisions.

Patient expectations influence care, Ms. Coults said. Customers came in with ideas shaped by the culture of fad diets and New Year’s resolutions. “Quite a few people would sign up for 1 month and not continue.”

In interviews with KHN and in online complaints, patients also questioned the quality of care they received. Some said intake – which began by filling out a form and proceeded to an online visit with a doctor – was perfunctory. Once medication began, they said, requests for counseling about side effects were slow to be answered.

Jess Garrant, a Found patient, recalled that after she was prescribed zonisamide, a generic anticonvulsant that has shown some ability to help with weight loss, she felt “absolutely weird.”

“I was up all night and my thoughts were racing,” she wrote in a blog post. She developed sores in her mouth.

She sought advice and help from Found physicians, but their replies “weren’t quick.” Nonemergency communications are routed through the company’s portal.

It took a week to complete a switch of medications and have a new prescription arrive at her home, she said. Meanwhile, she said, she went to an urgent care clinic for the mouth sores.

Found frequently prescribes generic medications – often off label – rather than just the new GLP-1 agonists, company executives said in an interview. Found said older generics like zonisamide are more accessible than the GLP-1 agonists advertised on social media and their own website. Both Dr. Butsch and Dr. Stanford said they’ve prescribed zonisamide successfully. Dr. Butsch said ramping up dosage rapidly can increase the risk of side effects.

But Kim Boyd, MD, chief medical officer of competitor Calibrate, said the older drugs “just haven’t worked.”

Patients of both companies have critiqued online and in interviews the startups’ behavioral care – which experts across the board maintain is integral to successful weight loss treatment. But some patients felt they simply had canned advice.

Other patients said they had ups and downs with their coaches. Dana Crom, an attorney, said she had gone through many coaches with Calibrate. Some were good, effective cheerleaders; others, not so good. But when kinks in the program arose, she said, the coach wasn’t able to help her navigate them. While the coach can report trouble with medications or the app, it appears those reports are no more effective than messages sent through the portal, Ms. Crom said.

And what about when her yearlong subscription ends? Ms. Crom said she’d consider continuing with Calibrate.

Relationships with coaches, given the need to change behavior, are a critical element of the business models. Patients’ results depend “on how adherent they are to lifestyle changes,” said Found’s chief medical officer, Rehka Kumar, MD.

While the startups offer care to a larger geographic footprint, it’s not clear whether the demographics of their patient populations are different from those of the traditional bricks-and-mortar model. Calibrate’s patients are overwhelmingly White; over 8 in 10 have at least an undergraduate degree; and over 8 in 10 are women, according to the company.

And its earlier marketing strategies reflected that. The September 2020 “segmentation” document laid out three types of customers the company could hope to attract: perimenopausal or menopausal women, with income ranging from $75,000 to $150,000 a year; working mothers, with a similar income; and “men.”

Isabelle Kenyon, Calibrate’s CEO, said the company now hopes to expand its reach to partner with large employers, and that will help diversify its patients.

Patients will need to be convinced that the model – more affordable, more accessible – works for them. For her part, Ms. Garrant, who no longer is using Found, reflected on her experience, writing in her blog post that she was hoping for more follow-up and a more personal approach. “I don’t think it’s a helpful way to lose weight,” she said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Many Americans turn to the latest big idea to lose weight – fad diets, fitness crazes, dodgy herbs and pills, bariatric surgery, just to name a few. They’re rarely the magic solution people dream of.

Now a wave of startups offer access to a new category of drugs coupled with intensive behavioral coaching online. But already concerns are emerging.

These startups, spurred by hundreds of millions of dollars in funding from blue-chip venture capital firms, have signed up well over 100,000 patients and could reach millions more. These patients pay hundreds, if not thousands, of dollars to access new drugs, called glucagonlike peptide–1 (GLP-1) agonists, along with online coaching to encourage healthy habits.

The startups initially positioned themselves in lofty terms. “This is the last weight-loss program you’ll try,” said a 2020 marketing analysis by startup Calibrate Health, in messaging designed to reach one of its target demographics, the “working mom.” (Company spokesperson Michelle Wellington said the document does not reflect Calibrate’s current marketing strategy.)

But while doctors and patients are intrigued by the new model, some customers complain online that reality is short of the buildup: They say they got canned advice and unresponsive clinicians – and some report they couldn’t get the newest drugs.

Calibrate Health, a New York City–based startup, reported earlier in 2022 it had served 20,000 people. Another startup, Found, headquartered in San Francisco, has served 135,000 patients since July 2020, CEO Sarah Jones Simmer said in an interview. Calibrate costs patients nearly $1,600 a year, not counting the price of drugs, which can hit nearly $1,500 monthly without insurance, according to drug price savings site GoodRx. (Insurers reimburse for GLP-1agonists in limited circumstances, patients said.) Found offers a 6-month plan for nearly $600, a company spokesperson said. (That price includes generic drugs, but not the newer GLP-1 agonists, like Wegovy.)

The two companies are beneficiaries of over $200 million in combined venture funding, according to tracking by Crunchbase, a repository of venture capital investments. The firms say they’re on the vanguard of weight care, both citing the influence of biology and other scientific factors as key ingredients to their approaches.

There’s potentially a big market for these startups. Just over 4 in 10 Americans are obese, according to the Centers for Disease Control and Prevention, driving up their risk for cardiovascular conditions and type 2 diabetes. Effective medical treatments are elusive and hard to access.

Centers that provide this specialty care “are overwhelmed,” said Fatima Stanford, MD, an obesity medicine specialist at Massachusetts General in Boston, a teaching hospital affiliated with Harvard. Her own clinic has a wait list of 3,000.

Dr. Stanford, who said she has advised several of these telemedicine startups, is bullish on their potential.

Scott Butsch, MD, director of obesity medicine at the Cleveland Clinic, said the startups can offer care with less judgment and stigma than in-person peers. They’re also more convenient.

Dr. Butsch, who learned about the model through consultancies, patients, and colleagues, wonders whether the startups are operating “to strategically find which patients respond to which drug.” He said they should coordinate well with behavioral specialists, as antidepressants or other medications may be driving weight gain. “Obesity is a complex disease and requires treatments that match its complexity. I think programs that do not have a multidisciplinary team are less comprehensive and, in the long term, less effective.”

The startups market a two-pronged product: first, the new class of GLP-1 agonists. While these medications are effective at provoking weight loss, Wegovy, one of two in this class specifically approved for this purpose, is in short supply because of manufacturing difficulties, according to its maker, Novo Nordisk. Others in the category can be prescribed off label. But doctors generally aren’t familiar with the medications, Stanford said. In theory, the startups can bridge some of those gaps: They offer more specialized, knowledgeable clinicians.

Then there’s the other prong: behavioral changes. The companies use televisits and online messaging with nutritionists or coaches to help patients incorporate new diet and exercise habits. The weight loss figures achieved by participants in clinical trials for the new drugs – up to 15% of body mass – were tied to such changes, according to Novo Nordisk.

Social media sites are bursting with these startups’ ads, everywhere from podcasts to Instagram. A search of Meta’s ad library finds 40,000 ads on Facebook and Instagram between the two firms.

The ads complement people’s own postings on social media: Numerous Facebook groups are devoted to the new type of drugs – some even focused on helping patients manage side effects, like changes in their bowel movements. The buzz is quantifiable: On TikTok, mentions of the new GLP-1 agonists tripled from last June to this June, according to an analysis by investment bankers at Morgan Stanley.

There’s now a feverish, expectant appetite for these medications among the startups’ clientele. Patients often complained that their friends had obtained a drug they weren’t offered, recalled Alexandra Coults, a former pharmacist consultant for Found. Ms. Coults said patients may have perceived some sort of bait-and-switch when in reality clinical reasons – like drug contraindications – guide prescribing decisions.

Patient expectations influence care, Ms. Coults said. Customers came in with ideas shaped by the culture of fad diets and New Year’s resolutions. “Quite a few people would sign up for 1 month and not continue.”

In interviews with KHN and in online complaints, patients also questioned the quality of care they received. Some said intake – which began by filling out a form and proceeded to an online visit with a doctor – was perfunctory. Once medication began, they said, requests for counseling about side effects were slow to be answered.

Jess Garrant, a Found patient, recalled that after she was prescribed zonisamide, a generic anticonvulsant that has shown some ability to help with weight loss, she felt “absolutely weird.”

“I was up all night and my thoughts were racing,” she wrote in a blog post. She developed sores in her mouth.

She sought advice and help from Found physicians, but their replies “weren’t quick.” Nonemergency communications are routed through the company’s portal.

It took a week to complete a switch of medications and have a new prescription arrive at her home, she said. Meanwhile, she said, she went to an urgent care clinic for the mouth sores.

Found frequently prescribes generic medications – often off label – rather than just the new GLP-1 agonists, company executives said in an interview. Found said older generics like zonisamide are more accessible than the GLP-1 agonists advertised on social media and their own website. Both Dr. Butsch and Dr. Stanford said they’ve prescribed zonisamide successfully. Dr. Butsch said ramping up dosage rapidly can increase the risk of side effects.

But Kim Boyd, MD, chief medical officer of competitor Calibrate, said the older drugs “just haven’t worked.”

Patients of both companies have critiqued online and in interviews the startups’ behavioral care – which experts across the board maintain is integral to successful weight loss treatment. But some patients felt they simply had canned advice.

Other patients said they had ups and downs with their coaches. Dana Crom, an attorney, said she had gone through many coaches with Calibrate. Some were good, effective cheerleaders; others, not so good. But when kinks in the program arose, she said, the coach wasn’t able to help her navigate them. While the coach can report trouble with medications or the app, it appears those reports are no more effective than messages sent through the portal, Ms. Crom said.

And what about when her yearlong subscription ends? Ms. Crom said she’d consider continuing with Calibrate.

Relationships with coaches, given the need to change behavior, are a critical element of the business models. Patients’ results depend “on how adherent they are to lifestyle changes,” said Found’s chief medical officer, Rehka Kumar, MD.

While the startups offer care to a larger geographic footprint, it’s not clear whether the demographics of their patient populations are different from those of the traditional bricks-and-mortar model. Calibrate’s patients are overwhelmingly White; over 8 in 10 have at least an undergraduate degree; and over 8 in 10 are women, according to the company.

And its earlier marketing strategies reflected that. The September 2020 “segmentation” document laid out three types of customers the company could hope to attract: perimenopausal or menopausal women, with income ranging from $75,000 to $150,000 a year; working mothers, with a similar income; and “men.”

Isabelle Kenyon, Calibrate’s CEO, said the company now hopes to expand its reach to partner with large employers, and that will help diversify its patients.

Patients will need to be convinced that the model – more affordable, more accessible – works for them. For her part, Ms. Garrant, who no longer is using Found, reflected on her experience, writing in her blog post that she was hoping for more follow-up and a more personal approach. “I don’t think it’s a helpful way to lose weight,” she said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.