A perspective paper published this week in the Journal of the American Medical Informatics Association outlined barriers to health equity research serving deaf and hard-of-hearing patients, and how EHRs may be making such barriers worse.  

Although EHR systems can be useful when it comes to identifying health inequities, researchers noted that they may also be interfering with efforts to improve health outcomes among deaf and hard-of-hearing American Sign Language (ASL) users.  

"Due to communication barriers and discrimination, DHH ASL-users experience deleterious social determinants of health and a myriad of health inequities when compared to non-DHH English-speaking patients including poorer health literacy, worse preventive screening outcomes, and higher rates of substance use," explained researchers.  

WHY IT MATTERS  

As the paper from the Journal of the American Medical Informatics Association (JAMIA) noted, 250,000 to 500,000 people are deaf and hard-of-hearing signed language users although more precise estimates for ASL user numbers are unknown.  

All the same, accurate language status is not always collected and recorded in the EHR – leading to widespread data quality issues. 

For instance, researchers noted, the most recent version of the National Patient-Centered Clinical Research Network Common Data Model classifies ASL as an "other" language.  

"This creates an issue of misclassification within health systems and clinical research networks who have adopted PCORnet CDM, limiting the ability for health services and clinical researchers to assess health disparities impacting patients who communicate in ASL – who have been lumped into a language category representing other languages of limited diffusion," noted researchers.  

In turn, data about ASL use can be coded within patient records but unavailable to researchers without Institutional Review Board approval for protected health information – presenting an additional hurdle that may not be solvable with query tools.  

Language status misclassification can have a variety of effects, as researchers explained: In a clinical setting, it can hinder patient-provider relationships and shared decision-making, as well as making it more difficult to hire an interpreter in a timely manner.

"In research, misclassification renders this population invisible, promoting the 'no data, no problem' problem, and hampers efforts to direct resources to promoting health equity for these priority populations," read the paper.  

Researchers offered ways of approaching the problem:  

• Health informatics leaders and software developers should include ASL and signed languages as options within data frameworks
• Health systems should work with health informatics providers to ensure that tools available to researchers and practitioners include languages of limited diffusion and non-majority languages when querying data points
• EHR users should accurately record the patient's preferred languages within their medical record  

"Given existing barriers – at all levels, from the EHR software provider to the EHR user – change agents and researchers attempting to increase uptake of patient preferred language options should consider using behavior change theories and implementation frameworks … to understand enabling and restricting factors related to uptake," read the paper.  

THE LARGER TREND

The role EHRs can play in research and care has attracted more scrutiny in recent years – particularly as patients have readier access to their records.  

For instance, a team of informatics experts this past month noted that existing sex and gender data collection practices do not reflect patient identity and diversity.   

This, as with deaf and hard-of-hearing patients, can obfuscate meaningful information and present barriers to care.  

ON THE RECORD  

"We recommend intentional steps – from all stakeholders – to ensure DHH ASL-using patients’ language statuses are accurately recorded to promote health equity for this population," wrote the researchers in the JAMIA paper.

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: kjercich@himss.org
Healthcare IT News is a HIMSS Media publication.