LAWRENCE, MASS. — Herman Quintero was cracking jokes about the lottery, touching just below his right eye for luck. It came down to the Mega Millions to pay the medical bill he pulled up on the Patient Gateway app on his phone. Or somebody lending a hand, he said, eyes puckish as they peered out from under a navy blue Tigers baseball cap — a relic of his years working on a car assembly line in Detroit — and over at the Digital Access Coordinator sitting beside him. Janelle Vargas shook her head. After two years helping him navigate his health care online, she was used to Quintero’s quips.
It was Vargas who helped him learn how to pull up his bill, or check on the long list of medications — souvenirs from several surgeries, a hodgepodge of hip replacements and carpal tunnel release — in his records on the Massachusetts General Brigham electronic patient portal.
A reformed technophobe, 65-year-old Quintero sometimes still relies on family members to help him do phone and email functions he refers to as “social media.” On a recent Thursday, he stopped holding court with receptionists at the medical offices long enough to ask for Vargas’s help at her desk in the waiting room. He needed assistance logging into his email account and figuring out a Zoom function. Besides folks at home, Quintero can count on one callused hand the contacts he has on his cellphone, and one of them is Vargas’s direct line in case he gets locked out of Patient Gateway, his patient portal.
Quintero was one of the first patients Vargas served in a program to pilot “digital access coordinators” at Pentucket Medical Riverwalk, a multi-specialty site in Lawrence that’s part of the Mass General Brigham system. The program helps train patients in digital health tools like electronic health records, online registration forms, and home blood pressure cuffs. The coordinators help prepare patients for virtual visits, explain the ins and outs of video calls, and take note of any tech or health patient concerns providers might need to know.
Generally speaking, they’re the frontline support for all things tech.
The DAC program was piloted as part of MGB’s United Against Racism health equity effort, which is centered on supporting diverse staff, leaders, and systems and multilingual communications. This emphasis on diversity is why it’s critical that digital access coordinators, or DACs, come from the community, said Allison Bryant, the senior medical director for health equity at MGB. People in the role only need to have a high school degree and be proficient in English. What they don’t need, she said, is to be “like the Geek squad — [they] don’t need to be high-tech folks.”
What matters most is that “many of our patients have felt very comfortable that the DAC is someone who might look like their granddaughter or might be whomever else,” said Bryant, adding that the teams are considering hiring interns with tech-savvy backgrounds to explain digital health concepts to patients as trusted messengers.
During the 2020 lockdown, before the DAC launch, bilingual high school students from places like Chelsea, Boston, Revere, and Everett worked remotely in a similar role through a Mass General Hospital student program. “The idea was, in theory, students are a little bit more techno-savvy and so this was leveraging that workforce,” said Aswita Tan-McGrory, director of the Disparities Solutions Center at Mass General Hospital. “Videos and tip sheets only go so far. And what you really need is a warm human being to show you how to do this, and preferably somebody who speaks your language if there’s a language barrier.”
The pandemic raised the stakes for virtual care and use of digital health tools — and underscored the disparities in access. The teams saw that white, English-speaking patients were much more likely than Black, Latinx, and non-English speaking patients to be active users of their patient portal.
Rachel Sisodia, chief quality officer at MGB, found structural racism even in basic office operations: MGB front desk staff were handing out iPads for patients to report health outcomes 20% less frequently to patients who were not white. When she discovered this, before the pandemic hit or the DAC program launched, she started sending out weekly reports on how much the numbers varied based on demographics. It took only a week to close that gap.
When the Covid-19 pandemic hit, Patient Gateway engagement for Black patients dropped by nearly half “almost overnight,” said Sisodia. Even though the MGB team fully translated its portal information into Spanish, engagement rates among Hispanic patients dropped down to 4%.
Initially, the team aimed to increase the Patient Gateway enrollment of Black and Latinx patients by 15%. They started small, by automatically texting or emailing patients to enroll in the portal, and then launched the DAC pilot.
Already, they’ve hit that 15% goal. The health system sees enrollment as a major measure of progress, in part because of the crucial role the portal plays in patient-provider communication. When Quintero contracted a urinary tract infection, his longtime doctor wasn’t available, so a nurse practitioner was assigned to his case. Later, at home and in pain, he found out the provider had prescribed the wrong antibiotic. After he was unable to ask the nurse practitioner questions, he sent his doctor a message through the portal that night to let him know and coordinate pickup for the new medication.
Sisodia said she believes patient-reported outcomes like these experiences are the only way medical institutions should measure quality. She acknowledged that view is controversial among health care experts. But as a cancer surgeon, she said, she has never been told by a patient: “I’m so glad I didn’t have an unplanned ICU admission.”
“What they care about is, was I able to get back on the floor and play with my grandkids after this?” she told STAT. “Was I able to go back to work? Am I continent? Do I have chest pain every time I walk?”
Their lifestyles and values, not just their conditions, dictate what matters most to patients — and a diverse staff with similar lived experiences, like DACs, can help a health system truly understand this, she said.
When the DAC staff feels they have reached almost all of the patients that they need to reach at a certain site, then they might pivot and open up operations at a new center. Doctors in other sites can also use referrals to have a DAC call the patient.
Key is streamlining communications between DACs and other MGB staff. Building relationships with providers and front-desk staff helps facilitate a “warm hand-off” from those clinicians, explained Michelle Zelen, senior program manager in digital access at MGB.
When providers see DACs on site, it jogs their memory to mention Patient Gateway to the patient and say, “‘Oh, hey, here’s someone you can stop by right after your appointment who will help you in person to make sure that you know how you can message me or how to sign on to your virtual visit,’” she said. “So, we’ve had a lot of success in that arena.”
Another key part of the work is addressing the specific language needs of the patients. That starts with accurately collecting demographic information on patients, including race, ethnicity, and language spoken, said Bryant: “We really feel strongly that we can’t improve things that we can’t measure. So if we’re not measuring things accurately, we’re not doing anyone any justice.” The initiative is getting “very close” to their goal of having 95% complete data on race, ethnicity, and language in its primary care population.
Patient Gateway has been translated into seven of the most commonly used languages among MGB patients: English, Spanish, Portuguese, Arabic, Traditional Chinese, Haitian Creole, and Russian. But one outstanding issue her department has yet to solve is how to perfectly match up a multilingual DAC workforce with patient needs: “If you happen to be in [one location] and you speak Mandarin, but the Mandarin-speaking DAC is working centrally or somewhere else, how do we link those things up?”
While the team tries to match DAC language capacities based on most commonly spoken languages at facilities, it won’t be a perfect fit. For now, bilingual DACs who don’t speak the patient’s primary language use virtual interpreters when necessary.
For Vargas, a Dominican native, the site in Lawrence — a town with a demographic more than 80% Hispanic or Latino and 40% Dominican — was an ideal place to use her bilingual skills and cultural knowledge.
“A person that just came from their country, that doesn’t know the language, that maybe has problems using technology, they may not even know that these resources are available to them.”
Janelle Vargas, digital access coordinator
“A person, for example, that just came from their country, that doesn’t know the language, that maybe has problems using technology, they may not even know that these resources are available to them,” said Vargas. It’s a stark contrast, she said, to young, English-speaking patients who visit their clinic, get an email to enroll in the patient portal, and sign up without a hitch.
The DAC team works to consider not just whether a patient is aware of their digital health options, but also what their preferences are.
“I’ve had interactions, or some of the navigators have had interactions, with patients who are just not interested,” said Jorge Rodriguez, a clinician-investigator at Brigham and Women’s Hospital who serves as a medical advisor for the DAC program. “They’re like, ‘I love just going to see my doctor in person. I love just calling in and talking to someone, I don’t really want to do this whole I’m gonna send a message or I’m gonna do it remotely’ … And so I think that’s the first part of it.”
Rodriguez said the second part of digital equity involves ensuring access to broadband and affordable devices. Under the DAC program, MGB gives out iPads for patients to take home to log into their portals. While the devices don’t address potential broadband issues, patients who lack access often bring their devices elsewhere or choose to log in at the facility on their own or the DACs’ devices.
“Then you have another layer which is, even if you have the tool in your hand and you’re able to pay for it, are you actually able to use it?” said Rodriguez. “And that’s really where the digital navigators come in.”
Even Vargas, who has become a familiar face in the DAC program, sometimes encounters hesitation from patients she approaches with an offer to help.
“People don’t realize that there’s also a cultural aspect to it,” said Vargas. “Some people might be skeptical, and say, ‘oh, what, are you trying to sell me insurance?’” With these patients, her main task is education. She explains that Patient Gateway would help them contact their providers and make virtual visits.
For many of the older, mostly Dominican, Puerto Rican, and other Latino patients at Pentucket, the hurdle is a deep-seated distrust of anything digital. Some are “old school, they don’t want to be on social media,” said Quintero. “I was like that, too. Some people think it’s political propaganda to get you online.”
Quintero leaned forward in his seat, inviting shared confidences about neighbors navigating Big Brother. His Bronx accent betrayed his past — growing up in East Tremont in the 1980s, back when he and his pals would sneak into the Bronx Zoo through a hole in the fence.
“You want to know how bad it is?” he said. “I got a buddy of mine who lives next door to me. Every time we come to a [traffic] light and there’s a camera, he covers his face and [yells] ‘They’re watching us!’… And I’m like, ‘Dude, they’re not gonna do nothing.’”
For some, that fear is heightened in any kind of medical or public health institution.
DACs also have to navigate the digital literacy divide. Sisodia’s research has cited studies that show it takes people with a 12th grade reading level much less time to navigate to their lab results on an “out-of-the-box” patient portal than those with a sixth-grade reading level. But making sure patients understand the platforms is part of the work they do day in and day out.
Quintero said his tech skills are proof enough of the maxim that old dogs can learn new tricks. Even as he’s better able to navigate the Patient Gateway, at home he leaves it to his wife to help him with phone login issues and alert him to new messages on the app.
Ultimately, he prefers staying off his phone as much as possible — other than taking care of his appointments and medications. He’d rather be feeding their two chickens and 10 quails on the small family farm, or taking two out of their three dogs out for walks — a pit bull named Blue and a chihuahua called Daisy. (Molly, a pug with “an attitude problem,” stays at home.)
Quintero recounted bumping into an 89-year-old man at the neighborhood liquor store while playing numbers the week before. The man gave him some free advice: The secret to keeping your freedom for as long as possible was always staying active — just as Quintero does with his mile-long walks with his dogs, or bouncing around to chat with receptionists at Pentucket, as he does every time he sees Vargas, never mind the post-surgery hips.
On his recent visit, after a conversation with Vargas where she ran through Zoom with him for his upcoming televisit, and guided him to an appointment email notice, Quintero carelessly slipped his phone into the pocket of his military-green jacket. His devices had the habit of “mysteriously falling” to their deaths under his watch. Before he left, he stopped to say goodbye to his “people,” including the nurse who’d just jabbed him with an allergy shot. Back home, he had chickens and cars to care for — the kind of work he could do without squinting at a screen that might always be a bit out of reach.