A pandemic-era rule change by the Department of Health and Human Services has given patients the right to access medical test results online at the same time as their doctors, but health care policy experts say electronic records systems are causing problems for patients with intellectual disabilities, dementia and language challenges.
“Access to health information through a portal is valuable, but it should never take the place of a personal conversation with a health care provider who has the training and experience to interpret the results in the context of each person’s health status,” said Dr. Craig Escude, a fellow of the American Academy of Developmental Medicine.
Medical providers’ cybersecurity systems are “typically very weak,” and online scammers have stepped up efforts to steal patient data, said Rich Quattrocchi, a vice president at Mutare, an Illinois-based cybersecurity software company.
In April 2021, the HHS office of the national coordinator for health information technology began enforcing a requirement for health care providers to give patients direct online access to test results as soon as they are ready. The rule stems from a 2016 federal law that increased patient access to electronic health records.
The advantages of providing the data directly to patients include increased records transparency and the automation of tasks that would otherwise require human staff, said Akanksha Karwar, chief operating officer at Aidin, a New York-based health care technology company.
“There was a trend toward digitization of health care prior to 2020, but the pandemic accelerated the adoption of that trend,” Ms. Karwar said in an email. “You couldn’t have people picking up COVID test results in person, risking the lives of others, and you didn’t have enough personnel to dedicate to calling with test results, so patient portals and testing portals all became a necessity. The piece that’s missing is that a large majority of the patients accessing these results are from a population where technical proficiency isn’t high.”
Many patients have embraced the portals, but some health care experts say they have added a wall between patients and doctors, decreased motivation for providers to interpret tests for vulnerable patients, deepened privacy concerns, and created the risk that more people will turn to the internet and misinterpret testing for serious conditions such as cancer.
“As giant hospital corporations gobble up the majority of physician practices, the sacred relationship between patients and doctors is increasingly lost to the needs of the big tech, big hospital bureaucracy,” said Katy Talento, who served as the top health adviser at the White House Domestic Policy Council under President Trump before the pandemic. “Treating vulnerable patients like human beings is not a priority.”
A survey of 8,139 patients at four U.S. academic medical centers, published March 20 in JAMA Network Open, found that 96% preferred receiving immediately released test results online even if their practitioners had not yet reviewed them.
The study — whose respondents were primarily highly educated, English-speaking White women — found that a subset of respondents experienced increased worry after receiving abnormal results.
Researchers said a finding that 39.9% conducted internet searches for additional information highlighted “potential unmet information needs.”
“Future studies should capture preferences among non-English-speaking patients and patients from underrepresented racial and ethnic populations and with underrepresented educational levels and socioeconomic status,” the researchers wrote.
Dr. Escude, a family physician, has spearheaded an initiative in Missouri to automatically share with telehealth providers the health risks of intellectually disabled patients. He said online patient portals are challenging for people suffering from memory loss, dementia and disabilities such as autism.
“This also opens up privacy issues if access to results is granted to another person,” Dr. Escude said in an email. “Additionally, interpretation of the lab results is seldom provided via a portal, leading patients to utilize the internet or other sources to interpret the significance of various results, which can result in misplaced anxiety and fear.”
Mr. Quattrocchi, of the cybersecurity firm Mutare, pointed to a report from Agari and PhishLabs that found voicemail or “vishing” attacks on medical workers succeed 34% of the time and have increased 550% since this time last year.
“Spear phishing involves a combination of voice phishing [vishing] and email to unwitting health care employees with portal access. This is a relatively easy way to gain access to a system by a bad actor,” Mr. Quattrochi said.
Officials said the number of medical practices offering online patient records has increased steadily over the past decade, setting the stage for HHS to make them mandatory during the pandemic.
A 2009 federal law allocated $19 billion to improve health information technology, including electronic medical records and patient portals. That law tied financial incentives to patient portal use, encouraging software developers to create them and providers to offer them.
In 2020, about 6 in 10 people received access to patient portals and nearly 40% accessed them at least once, according to figures that the HHS office provided to The Times. Nearly 4 in 10 of those users accessed the portals with smartphone apps.
“Individuals encouraged by their health care provider to use their patient portal accessed and used their portal at higher rates compared to those not encouraged,” a spokesperson from the federal office said in an email. About one-third of patient portal users in 2020 downloaded their online medical records, a proportion that nearly doubled since 2017.
As of 2021, 96% of non-federal acute care hospitals and nearly 4 in 5 office-based physicians had adopted certified electronic health records systems, according to HHS office. That was up from the 28% of hospitals and 34% of physicians who had such systems in 2011.
These spikes have outpaced the ability of some seniors to keep up, even though they have more medical needs than younger adults, said Diane Ty, senior director of the Center for the Future of Aging at the Milken Institute, a California-based economic think tank.
She pointed to a Milken study last year that found adults 65 and older and those with limited English proficiency had the highest proportions of “below basic” health literacy. The study found that age-related cognitive decline, rather than a loss of vision or vocabulary, was the biggest driver of decreasing health knowledge.
“It is generally harder for older adults to adapt to innovations in health technology,” Ms. Ty said.
The number of Medicare beneficiaries using telehealth services grew dramatically early in the pandemic. From mid-March through mid-October 2020, more than 24.5 million out of 63 million beneficiaries received Medicare telehealth services, according to the Centers for Medicare and Medicaid Services.
Nevertheless, the AARP Older Adults Technology Services has estimated that 40% of older adults could not access needed online services from their homes during the pandemic.
A separate AARP survey released in December 2021 found that 2 in 5 adults older than 49 didn’t think new technology was designed with them in mind. That share increased with age, from 39% of those 50-59 to 40% of those 60-69 and 45% of people 70 and older.
• Sean Salai can be reached at email@example.com.
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