The Deaf Experience in Telehealth Accessibility

The use of telehealth has boomed thanks to the pandemic. Even though the pandemic has passed, the healthcare industry continues to use telehealth. While telehealth is a great option for many, it wasn’t something I wanted to try as a deaf person.

For those who don’t know me, I avoided it because I was born profoundly deaf. While my main method of communication is speaking and lipreading, communicating through video is a whole different ballgame. More so when there are no captions.

Fortunately, I avoided telehealth for more than a year. But then my luck ran out. One of my doctor’s offices wanted a telehealth appointment. Dagnabbit.

I depend on captions. They’re not a luxury. First, let’s rewind to the beginning of the health crisis. It feels like it happened ages ago.

A Deaf Person’s Journey from Captioned Video Calls to Telehealth

Between becoming a full-time remote worker in 2005 and the pandemic’s arrival in 2020, I only had maybe five video calls if that. After the pandemic and now? I’ve lost count as I attend multiple video meetings every week.

Very few video conference platforms had captions in the pandemic’s early days. Thanks to a colleague discovering a clever workaround, I started researching more ways to automatically caption video calls.

Within months of the pandemic’s arrival, Microsoft Teams and Google Meet added automatic captions. Zoom initially made auto-captions available for deaf and hard of hearing customers who signed up for it. Eventually, they made it available free for all Zoom accounts.

But Zoom required turning on captions at the account level for it to work. Every Zoom account requires this step today to make the captions available. I still run into Zoom meetings with no caption option. Yes, this is still happening four years later!

However, knowing what I know about healthcare platforms, I suspected the telehealth appointment would not take place on a familiar platform. Thanks to privacy laws, the healthcare industry depends on specific apps to manage patient care. I knew they would not use the standard video platforms most of us use.

I had no idea what to expect. What software is it? Will it have a chat box? Will it miraculously have captions?

My First Deaf Telehealth Experience

Anyway, the healthcare provider said they’ll send a link within an hour of the appointment. So, up until the day of the appointment, I had no idea what platform it would use. It’s concerning that they send the link right before the appointment. What if someone could not access the email to get the link?

Rather than rely on automatic captions (there weren’t many options at the time!), my spouse said they’d attend the appointment with me. I sat at my desk. My spouse stood behind the dual monitors. This way I could read their lips while talking to the physician’s assistant (PA).

If my spouse hadn’t been available, I would’ve captioned the video call with an automatic captioning or transcription tool or two. At the time, I had too many bad experiences with the transcriptions dropping or going bananas.

When I attend an appointment or important meeting, I run at least two captioning apps. I’ve had a few times when I opened all the captioning tools and none of them worked. One app changed how it works. Another faltered. A cloud-based app wouldn’t load.

The problems with the call weren’t the ones I expected. The connection was terrible, causing the video quality to flounder. I couldn’t see the PA very well because of bad lighting. But what surprised me most was the lack of a chat box.

I rarely run into a video call without a chat box option. Usually, it only happens during webinars. It usually happens when the person hosting opts to turn off the chat to limit conversations during the event. One virtual reality platform had no chat box. I had no way of communicating.

To prepare for a medical appointment, I have a list of medications and other medical information handy. I pulled mine up on my screen to have it ready to share. Thanks to no chat box, I couldn’t copy and paste the list.

Fortunately, the platform had screen sharing. So, I shared my screen to display the list of medications. Still, I’d rather paste the information into a chat box. My screen had other information that the PA didn’t need to see.

I survived that appointment. Then two years later, I had to do another telehealth appointment with the same practice. By then, I had more captioning tools to help. I thought maybe the deaf telehealth experience would be better. Wrong. It was exactly the same.

What Telehealth Platforms for Deaf Patients Need

I shared my inaccessible deaf telehealth experience on LinkedIn. The post garnered many comments with valuable insights and experiences. Several healthcare experts said many telehealth platforms exist and they weren’t aware of any that advertised having captions.

Companies, if you integrate captions into your platform, advertise all the accessibility you offer. This is a competitive differentiator. The key is to provide multiple ways of communicating with patients.

While not all companies are required by law to support captions, accessibility is a human right. Nonetheless, it isn’t good enough for many companies to offer it. Healthcare contains many terms that automatic captions will mess up. That’s why I often jokingly and seriously refer to them as autocraptions.

Accommodating patients who prefer captions would ideally call for bringing in a live captioner known as CART, which stands for communication access real-time translation. This is a human captioner who types what is said. There is no artificial intelligence or respeaking involved.

CART would work for me. But I never ask for it. Why? Because I know the doctor’s office won’t know what I am talking about. They won’t know how to obtain one. It’s too much work to bother. I’d rather manage the appointment myself or bring a family member with me.

Anyway, many captioning companies may state they offer live captioning or real-time captioning. But this doesn’t always mean it involves a person doing the captioning. Or if it does, it may or may not be someone typing the captions.

Some companies using “live captioning” may have an automatic component in the process. As you research captioning services, verify whether it’s automatic captions or a person doing the captioning by typing.

Accessibility for the Deaf and Hard of Hearing

If it is a human doing the captioning, ask if the captioner types (CART), respeaks the captions, or uses artificial intelligence. Respeaking is when the captioner repeats what the speaker says. The software converts speech to text. And this isn’t always accurate, especially with technical terms and proper nouns. CART is the preferred option.

Healthcare providers who do the right thing to ensure accessibility make it clear they will provide captioning and interpreters. Patients shouldn’t have to ask. It’s a struggle for some people to request the service. Part of it is they think the provider will have no idea what they’re talking about. The other part stems from the discomfort with asking or not wanting to put people out.

Healthcare is the one facet of our lives that we should never settle for less and not have all the information we need. It could be a matter of life and death.

Telehealth Platform Considerations

At a minimum, a telehealth platform should include a chat box and a way to share files. Even if the platform has automatic captions, it still needs a chat box. Captions will not get some terms right. The chat box allows the provider to enter the correct term. The ability to customize the text in the chat is important because some people require larger text or a different font.

In the pandemic’s early days, telehealth appointments had to take place through the telehealth platform to guarantee HIPAA protection. Now it’s possible to use a different platform from the doctor’s own for video calls as long as it’s HIPAA compliant according to Grady Gibbs. To determine if a platform is HIPAA compliant, check with the company.

For example, Zoom’s HIPAA Compliance Datasheet explains how they support each standard. The complex healthcare system is challenging even for people who speak English and don’t have trouble hearing. Add hearing disabilities and it can leave the patients feeling isolated, alone, and frustrated. But here are things to try.

What Can Deaf Patients Do About Telehealth?

The onus for providing accessible communication should lie with the healthcare provider. However, people who need accessibility will need to be prepared to ask for them and have a backup plan. They will do what they’ve always done: advocate for themselves.

Deaf and hard of hearing people are diverse as any other group. We all have different communication preferences. This covers two common categories: those who prefer sign language and those who prefer captions.

The sign language group can also apply to specific options, such as American sign language, signed exact English, and cued speech. Note these are the common groups. I met someone who is Deafblind. She doesn’t use screen readers or Braille for communication. She often relies on a communication facilitator.

Here’s the definition of a communication facilitator according to the Seattle Deafblind Service Center: “A communication facilitator, or CF, is a skilled signer who copies sign language from a caller as shown on a videophone screen, and provides visual information to a deafblind person through close vision or tactile sign language during VRS (video relay service) and/or face-to-face calls. CF service also benefits deafblind individuals by allowing them to freely express themselves in their own language and to communicate directly without worrying about English being their second language.”

Another option is to use a text-based approach or email the doctor through the healthcare provider’s portal. She’s also had her doctor use the IP relay service to call her through telehealth.

Deaf Patients Who Prefer Sign Language

In the U.S., someone who prefers American Sign Language (ASL) may ask the provider about providing an interpreter through the telehealth platform. However, many telehealth platforms do not support third-party access. Therefore, an interpreter cannot join the deaf person’s telehealth appointment.

As an alternative, some healthcare providers have opted to use video chat or the video relay service (VRS). This allows Deaf and hard of hearing ASL users to communicate with the healthcare provider who uses a voice-only phone. The patient uses video — it may be through a smartphone, laptop, or webcam — to communicate with the interpreter in ASL. The patient and the interpreter can see each other.

During the call, the VRS interpreter connects with the healthcare provider who uses a voice phone. In this scenario, the patient and the healthcare provider do not see each other. In short, the interpreter acts as the middle person. The interpreter translates the patient’s ASL into speech for the provider. While the provider replies, the interpreter translates speech into ASL back to the patient.

The Challenges of VRS for Deaf Telehealth

Despite the wide use of VRS, some Deaf advocates do not recommend the use of VRS for healthcare services.

“The standards for VRS are not designed for healthcare settings,” says Corey Axelrod, founder and CEO of 2axend. “VRS interpreters are not required to be nationally certified — each VRS provider sets up their own standards. Furthermore, interpreters may not have appropriate medical interpreting training. Relying on an interpreter who is ill-prepared to facilitate a healthcare-related encounter can adversely impact the patient’s experience and outcomes.”

Axelrod also shares that VRS does not provide a functionally equivalent experience for Deaf and hard of hearing patients. If interpreters can participate in deaf telehealth sessions, they can see both the healthcare provider and Deaf or hard of hearing patient. In situations where diagrams or results need to be conveyed via remote sessions, the interpreter would not be able to see it via a VRS call and the interpretation may not be conceptually accurate.

DeafFriendly Founder Melissa “echo” Greenlee, a late-deafened person who has speaking skills, prefers to use sign language when communicating. It’s the clearest to her. “In the absence of a qualified ASL interpreter and depending on the urgency of the medical situation, I’m willing to use the chat box to communicate if I have to,” she says. “However, I always prefer an ASL interpreter over anything else as it’s easiest for me to understand.”

Deaf Patients Who Prefer Captions

For patients who are comfortable with face-to-face appointments that follow health protocols, ask if it would be possible to do it in person. Explain that it’s the most effective communication setting for you.

If they don’t allow the in-person appointment or you prefer to avoid it, ask about the telehealth platform. Does it have captions? Does it have a chat box? Can they get a captioner who can add captions as an overlay? What this does is allow the captions to appear on top of what’s on the screen. Think of it as free-standing captions.

Should none of the options work, select at least two automatic captioning and transcription apps to use in the telehealth appointment. Having two apps will help you switch if one has technical problems or stops working. I’ve had captions stop because the service has a limit on how long they run or because of technical issues.

If possible, pick two apps that are on different platforms. For example, you might have an app on your phone and another on your tablet, laptop, or desktop computer. This way if the computer encounters problems, you have a backup on a different platform.

What Healthcare Providers and Telehealth Platforms Must Do

The most important thing is that patients should communicate in the manner that’s most comfortable. Bilingual people often prefer one language because it’s more comfortable for them.

Telehealth platform providers need to incorporate features to support captions and an interpreter, whether it’s ASL or for a different language. It would help for the platform to add a feature where patients can indicate their communication preferences. It would be especially valuable to incorporate CART as an option. If it’s available, advertise this on the provider’s website under communication options.

Healthcare providers who want to serve their patients need to post on their website that they offer these. Better yet, invite patients to share their preferred method of communicating. For more guidance, refer to the Hearing Loss Association of America guidelines for effective communication in health care for Deaf and hard of hearing patients.

Hopefully, I won’t be doing telehealth again anytime soon. Nonetheless, if I do, I will ask my provider about using Zoom since it’s HIPAA compliant. If that’s a no-go, then the next step is to load a few automatic caption tools.

A Medical Express article references a study led by Dr. Michael McKee. Published in the “Journal of Health Communication,” the study reveals deaf people are “seven more times more likely to have inadequate health literacy compared to people who can hear.” This needs to change.

For more resources on healthcare for people with disabilities, refer to Offering Healthcare? The ADA and the Affordable Care Act Mean Accessible Telehealth, #HealthTech, and Content from Lainey Feingold, a disability rights lawyer.

Telehealth is here to stay and it’s time to ensure it’s accessible to deaf people and people with other disabilities. It’s a matter of life and death.

Want Great User Experiences for the Deaf and Hard of Hearing?

Creating great user experiences for deaf and hard of hearing customers, clients, and employees requires more than ASL and captions. My lifelong experience living as a deaf person and meeting many deaf and hard of hearing people along the way has provided me with unique insights. I offer training and consulting services tailored to your needs. Contact me or get to know me.

Image by Microsoft Image Credit with the following prompt: Abstract art paper art origami diorama of a person on a video call, modern art ukiyo-e style, colorful.

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