When the 21st Century Cures Act went into effect on April 5, 2021, few nurses realized the far-reaching impact the legislation would have on their work, their relationships with patients, and their personal health care experiences.
The legislation, which was signed into law in 2016, was intended to "promote patient access to electronic health information, advance innovation, and address information blocking practices," as described by a recent editorial in JCO Oncology Practice. Many in the health care industry have interpreted this to require the immediate release to patients of all medical test results-and, perhaps, all available health information.
Yet, the 21st Century Cares Act doesn't reference online patient portals, which are now used regularly to share information between patients and providers. Similarly, the 2020 Cures Act Final Rule from the Office of the National Coordinator for Health Information Technology (ONC), which established information-blocking exceptions to this law, doesn't mention patient portals or mandate immediate or real-time access to information. However, because information blocking isn't allowed and the ONC has noted that "a delay in making EHI [electronic health information] available through a 'patient portal'. . . could constitute an interference and thus implicate the information-blocking regulations," most hospitals and health care centers are now giving patients immediate access to health information via online portals.
This offers undeniable benefits to patients, including quick and easy access to their personal health data, but there are also unintended consequences to such access.
EDUCATION IS NEEDED
The patient waiting for care in your ED may hear a ding on his phone and learn about his abnormal labs before you do.
"You and I might look at those labs and think, 'No big deal,'" says Jack Rodgers, MBA, BSN, RN, CEN, a member of the Emergency Nurses Association's board of directors. But most patients don't understand that slight variations in laboratory values are normal and not necessarily a cause for concern.
"They see 'abnormal' and say, 'How dare you make somebody that's sick like me wait?'" he says, noting that patient education regarding online portals is necessary. "We need to socialize patients to the technology and help them understand how it works in conjunction with how we take care of people."
Such outsized reactions to laboratory results are but one unintended consequence of making health information immediately available on an online patient portal. Other concerns include the exacerbation of health disparities, patients' discovery of medical mistakes, and the communication of health information without context.
EXACERBATION OF HEALTH DISPARITIES
Although patient portals are designed to help with the management of personal health information, their proliferation may also be creating barriers to care for some people.
"Patient portals have the potential to exacerbate existing health disparities, particularly among those who lack access to the necessary technology or possess insufficient resources and knowledge to use them effectively," says Michael LeTang, MS, RN-BC, CCRN, chief nursing informatics officer and vice president of risk management and patient safety at Healthcare Risk Advisors.
Research has shown that barriers to online portal use include patients' lack of computer access, difficulty in successfully accessing portals, and privacy concerns. A study in the March 2018 JAMA Oncology of portal access among more than 19,000 people being treated for cancer found lower rates of test result viewing among Black and Spanish-speaking patients. A retrospective study in the April 2021 JAMA Oncology noted that the electronic health records of more than 250,000 oncology patients revealed lower portal enrollment rates among those who were nonnative English speakers, older than age 70, Black, and Hispanic.
Differences in usage and access, according to a study in the February Journal of the American Medical Informatics Association, may result from implicit bias. The study found that in 2019 and 2020, Black and Hispanic patients were "significantly less likely" than White patients to be offered portal access by their health care provider. Implicit bias may also hinder older adults' use of patient portals. Although many health care providers assume older adults are not tech savvy, the results of a study of older adults (average age, 69.7 years) in 2020 in Geriatric Nursing indicate that most use the internet and find patient portals "helpful" and "valuable." An article published the same year in the Journal of the American Geriatrics Society found that adults ages 85 and older and their caregivers "readily utilized" patient portals to facilitate care.
Nurses and other health care providers should educate all patients and family caregivers on online patient portals, including how to access the portal, submit refill requests and questions, receive messages, and review health information.
FINDING MISTAKES
When New York writer Jenna Glatzer checked her patient portal after a recent cardiologist appointment, she was horrified to discover the physician's notes said he "discussed the American Heart Association's recommendation to exercise at least three days a week" with her and "recommends weight loss and intermittent fasting for heart health."
"We definitely never discussed those things, and if he had, it would have been irresponsible of him," said Glatzer, who is trying to maintain her weight after unexplained weight loss and is not currently allowed to exercise due to an uncontrolled heart condition.
Glatzer is far from the only patient to find mistakes in her online chart. On her blog, White Coats, Paper Gowns, Victoria Wilcox described in 2021 how she found physician "visit notes [that] said we had discussed several things that I believe never came up."
"It seemed that we had attended different virtual visits," she wrote. Because notes are shared among health care professionals, Wilcox said she was concerned that "my doctor's words threatened to bias my future treatment and risk my health."
Her concern is not misplaced. Inaccurate information can indeed jeopardize patients' health and relationships with their health care providers. And such mistakes are not unusual-a study published in April 2021 in the Journal of the American Medical Informatics Association found that 17% of patients discovered at least one perceived mistake in their medical record; of those, 44% believed the mistake was serious. Yet, many patients didn't notify their provider, largely because they didn't know how to report the mistake and didn't want to be considered a "troublemaker."
In theory, access to electronic health information can empower patients and give them a larger voice in their care. In practice, patients need instruction regarding how to report and discuss possible errors in their chart, as well as reassurance that the health care team appreciates their input. Health care providers must also remember to document "their clinical findings in an objective, impartial, and factual manner that is easily comprehensible," LeTang says.
A LACK OF CONTEXT
Crissi Estep, BSN, RN, was shocked when she learned-via the online portal MyChart-that she's at increased risk for leukemia. She'd undergone a bone marrow biopsy to assess another health condition, she explains, and someone "checked the box" to test for a leukemia conversion gene. Estep had to undergo additional testing to confirm the unexpected finding.
Other people have discovered they have cancer via patient portals, and many more have experienced confusion and anxiety after viewing test results and provider reports on the portal. Because results (and notes) are now often available to patients as soon as they're uploaded to the system, providers frequently don't have the opportunity to discuss health information with patients before they view it online.
Research has found that patients generally prefer online communication when they have medical questions and to access test results and treatment instructions, but context matters. A 2022 American Medical Association survey of 1,000 patients nationwide found that 43% of respondents preferred to receive laboratory and diagnostic test results immediately, but more than 50% of these wanted their physician to review the results and contact them first if a "debilitating, life-limiting or terminal illness" was indicated.
COMMUNICATION PREFERENCES
Nurses should ask patients about their preferences regarding health care communications. And if patients are awaiting sensitive results that will be immediately released via the portal, nurses can remind them that they don't have to view the results right away and can instead wait for a phone call or their next appointment.
Patient education is crucial to helping patients understand the potential and limitations of accessing personal health information via online patient portals. "It's essential to address these unintended consequences through persistent patient education and provider training," LeTang concludes, noting that these are "crucial in maximizing the benefits of patient portals while minimizing potential negative impacts." -Jennifer Fink, BSN, RN