Blind to problems: How VA’s electronic record system shuts out visually impaired patients

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.