Achieving telehealth equity for people with hearing loss

Gen Z has made captioning cool. Captions are now widely available in social media, entertainment channels, and web conferencing platforms, including YouTube, Hulu, and Zoom. Yet, there is one extremely important place where captions are not regularly available: telehealth visits. This disproportionately affects people with hearing loss.

A friend of ours with hearing loss, whom we will call Cheryl, recently told us about her disappointing telehealth visit. She spent over an hour struggling to hear her doctor and to communicate her health concerns. Her doctor works in a shared space, which had extensive background noise, and chose to wear a mask, which prevented Cheryl from using non-auditory cues. Without captioning or a chat function, Cheryl could not engage with her doctor and ended the appointment feeling frustrated.

This visit is a great example of the struggles people with hearing loss encounter when navigating the health care system. Those with hearing loss also have trouble with telephone-based medical inquiries, waiting areas, emergency rooms, operating rooms, as well as most of the other locations in busy, noisy hospitals.

The three of us have hearing loss and are active members of the hearing loss community. We have all faced similar challenges, but Cheryl’s experience summarizes the issues individuals with hearing loss can face.

The Department of Health and Human Services recommends that health institutions select telehealth platforms with live captioning as a feature and provide closed captioning for pre-recorded patient video resources.  Yet, automatic or real-time quality captions continue to be absent in many visits. We reviewed the telehealth platforms as reported online by the top 20 US News Best Hospitals in 2022 and discovered that only 40% employed platforms that routinely offered automatic captioning.

As telehealth usage continues to become a mainstay of modern health care, we believe that captioning that is compliant with the Health Insurance Portability and Accountability Act of 1996 (HIPAA) needs to become available for all telehealth visits.

Captioning is important in ensuring access to care, especially for people with hearing loss, who have known health care disparities resulting in higher emergency department visits, medical costs, and health care use.

Access to effective communication, including captioning, is a legal right for people with hearing loss. As Lise Hamlin, former director of public policy for the Hearing Loss Association of America wrote in an email to us, people with hearing loss have legal protections that ensure accessible telehealth visits, including through the Americans with Disabilities Act, Civil Rights Acts, Patient Protection and Affordable Care Act, Rehabilitation Act, and Twenty-First Century Communications and Video Accessibility Act (CVAA). Furthermore, under the CVAA, the Federal Communications Commission released a new order requiring all video platforms to be accessible with captioning, text-to-speech capability, and sign language interpreting, effective September 3, 2024, which would be applicable to telehealth. While the laws have been moving in the right direction, we urge more institutions to start making these changes.

More and more people — not just those with hearing loss — are using captioning. In an online survey performed by Vox with 105,000 participants, 88% of respondents indicated that they use subtitles: 57% because they cannot understand what is being said, 29% for foreign programming, and 2% due to hearing loss. Vox’s analysis suggests that miniaturization of microphones and speakers has resulted in poorer acoustical environments, enunciation, and sound quality. It was likely that Cheryl and her doctor were both using built-in microphones on their computers or basic microphone headsets, leading to poor sound quality and speech intelligibility.

There are several major obstacles for people with hearing loss to having accessible telehealth visits. While telehealth accommodation guidelines exist, such as those written by the HHS/U.S. Department of Justice and the ADA, it is not easy for consumers to find this information, and many people with hearing loss do not know what their rights are under the law. Not all of the major telehealth platforms, such as Epic’s OnDemand, provide routine automatic captioning.

There is a misconception that enabling captioning might violate the privacy clauses of HIPAA if the platform stores the captions. While it is important for platforms to explicitly state whether their captions are HIPAA-compliant and for health systems to confirm that, HIPAA-compliant automatic and real-time captioning platforms exist. And it is feasible to be HIPAA-compliant while giving patients accessible care. Karen Peltz Strauss, a disability accessibility legal consultant, told us that HIPAA cannot be used as an excuse for not providing captioning and that steps can be taken to ensure HIPAA compliance, including patient disclosures or waivers.

Ultimately, health systems should find solutions that allow people with hearing loss to fully engage in their video visits. Taking into account their organizational resources, institutions must provide reasonable accommodations to patients, which could include captioning. Lack of captioning by health systems is a disservice to their patients, may violate their legal rights, and puts them at risk by not giving them full access to their care.

Making telehealth platforms more accessible to people with hearing loss by including captioning would transform the telehealth and health care experiences of tens of millions of Americans with hearing loss.

Zina Jawadi is a fourth-year medical student at the David Geffen School of Medicine at UCLA and serves on the Hearing Loss Association of America’s board of directors. Stephen McInturff, Ph.D., is an auditory scientist working on gene therapy to address hearing loss. Alexander Chern, M.D., is a fellow in otology, neurotology, and skull base surgery at Johns Hopkins University. The authors thank Lise Hamlin, Karen Strauss, and Ayesha Rasheed for sharing their legal and/or accessibility expertise, and Drs. Jan Blustein and Benjamin Ansell for their perspectives and feedback. The views expressed here are the authors’ and do not necessarily reflect the institutions with which they are affiliated.