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Digital health disparities undercut Cures Act's open notes policy
Without systems to address digital health disparities, the open notes policy under the 21st Century Cures Act will remain limited to a subset of patients.
The 21st Century Cures Act has a health equity problem, according to a research note in JAMA Health Forum.
The law, whose provisions mandate patient access to open notes, certainly has the power to improve engagement, according to the analysis. However, the open notes policy is more effective with some patient populations than others.
Open notes existed as a concept long before the federal government mandated it as part of the Cures Act's information blocking provisions. The philosophy states that patients should have the right to view the clinical notes left by their healthcare providers. This ideally helps improve patient engagement, support treatment adherence and even enable patients to flag medical errors.
Since the rollout of open notes, more patients have viewed their clinical notes and been able to access their records more quickly. However, it's also sparked debate about who benefits from the policy and any specific guardrails or tools needed to ensure it's a net positive for all patients.
This report centered on a single health system in Massachusetts that implemented an open notes policy in October 2020, a few months before the federal deadline. The researchers assessed notes related to 546,173 visits involving 85,433 adult patients before and after the policy rollout.
Broadly speaking, the policy was a boon, with 54.8% of patients viewing or engaging with at least one clinical note.
But that number plateaued after just two months, likely due to steep disparities in who accessed the notes.
Which patient populations view open notes?
There were differences in open note engagement across nearly every demographic factor the researchers investigated.
For example, adults over age 65 were more likely to view open notes than their younger counterparts (56.8% versus 53.6% among 18-39-year-olds and 54.5% among those aged 40-64). This is likely due to greater medical complexity among the Medicare crowd, who might see more value in reading their notes to guide their care plans.
Unsurprisingly, there were also differences based on regional broadband quality. Folks living in areas with poor internet access were less likely to review open notes than those with better internet access, underscoring the role infrastructure plays in the digital divide.
But perhaps most notable were the disparities based on race and language preference.
Patients who prefer to speak Spanish (40.9%) or another language (43%) were less likely than English-preferring patients (55.4%) to view open notes. This may not be surprising, the researchers noted. Clinical notes are not usually translated into patients' preferred language, rendering them useless for those with limited English proficiency.
Meanwhile, engagement rates were lower among Asian (50.8%) and Black (46.5%) individuals than among White people (55.8%). This digital health disparity remains even among individuals who can access the requisite technology to engage with open notes.
Racial disparities in open-note engagement could indicate a bigger problem with patient trust. People and populations with a history of mistreatment by the medical establishment might be less likely to trust, and therefore engage with, healthcare settings. Mistrust might also impact patient preferences for accessing digital health information.
Expanding the Cures Act to support health 'techquity'
Overall, these digital health disparities represent a missed opportunity to let the Cures Act and open notes provisions truly benefit patients, the researchers indicated.
Without new approaches to enhance open notes, they will continue to only benefit select patient populations. Instead, healthcare leaders should focus on "techquity" or the idea that everyone has an equitable opportunity to benefit from health IT.
"Results suggest ongoing barriers to sustained engagement and missed opportunities to expand access to open notes, especially among socioeconomically disadvantaged and minoritized patients," the researchers concluded.
"Health systems could implement strategies to support wider, more equitable engagement with open notes, such as email or text message reminders, staff encouragement during patient visits, streamlined portal access, and AI-enabled summarization or translation of notes to align with patients’ health literacy level or preferred language."
Sara Heath is an executive editor at Xtelligent Healthcare Media, where she covers patient engagement, healthcare policy and health IT.
