After a whole year of the pandemic, it finally happened. Others in my family had been regulars by that point. Not me. Fortunately, the few medical appointments I had required me to come into the doctor's office. And then it got me. One of my doctor's offices didn't want me to come in.

They wanted a telehealth appointment.

Dagnabbit.

For those who don't know me, this felt daunting because I'm hearing-free. You see, I was born profoundly deaf. While my main method of communication is speaking and lipreading, communicating through video is a whole different ballgame. There's a reason why I depend on captions.

They're not a luxury for me.

But first, let's rewind to the beginning of the pandemic. By now, it feels like a decade ago.

 

The 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 did maybe five video calls ... if that. After the pandemic? I've lost count of how many times I've attended video meetings and conferences. That has been an adventure.

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

Upon reaching the one-year anniversary of the pandemic in the U.S., Microsoft Teams and Google Meet had built-in automatic captions. Zoom made auto-captions available for deaf and hard of hearing customers who sign up for it. At some point, the feature will be available on all Zoom accounts.

But knowing what I know about healthcare platforms, I suspected the telehealth appointment would not take place on a familiar platform. I had no idea what to expect. What software is it? Will it have a chatbox? Will it miraculously have captions?

 

My First Telehealth Experience

Anyway, the healthcare provider said they'll send me a link within an hour of the appointment. So, up until the day of the appointment, I had absolutely 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 autocraptions (I can't help it. I call them autocraptions because they always contain mistakes.), my spouse said he'd attend the appointment with me. I sat at my desk and he stood behind the dual monitors. This way I could read his lips while talking to the physician's assistant.

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 telehealth setting didn't have a chatbox.

I can't recall a time when I joined a video call without a chatbox option. OK, there were a few webinars without one. That's because the person hosting opted to turn it off to limit conversations during the event. But it has never happened in one-on-one or small meetings.

All healthcare providers always ask for a list of medications and other information. I pulled mine up on my screen to have it ready to share. Well, I couldn't copy and paste the details with no chatbox.

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 chatbox. My screen had other information that the PA didn't need to see. If my spouse hadn't been available, I would've captioned the video call with an automatic captioning or transcription tool or two. I've had too many bad experiences of the transcriptions dropping or going meshuga.

One app had an endurance problem. The longer it captioned, the more inaccurate it became. During a very sluggish moment, it wrote "Jock itch." No one in the meeting said anything that sounded anything like that!

Anyway, when I attend an important meeting, I run two captioning apps. I've had a few times when I opened all my usual captioning tools and none of them would work. One app changed how it works. Another faltered. A cloud-based app wouldn't load. #BadLuck

 

What Telehealth Platforms Should Have

I shared my 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 this! Even Global Accessibility Awareness Day Co-Founder Jennison Asuncion recommends this. "Marketing your product as accessible ultimately becomes a competitive differentiator," he said in Diamond's Conversations with Accessibility Experts interview.

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 autocraptions will mess up.

"While not all companies are required by law to support captions, accessibility is a human right."

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.

Personally, CART would work for me. But I never ask for it. Why? Because I know the doctor's office will not 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.

Male doctor using an iPad

As medical professionals embrace technology and virtual appointments in the wake of the COVID-19 pandemic, new challenges have appeared for the deaf and hard of hearing. 

 

How to Select the Right Captioning Service

If it is a human is doing the captioning, ask if the captioner types (CART) or respeaks the captions. 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 should not 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 matter of life and death.

At a minimum, a telehealth platform should include a chatbox and a way to share files. Even if the platform has auto captions, it still needs a chatbox. Captions will not get some terms right and the chatbox 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.

"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 matter of life and death."

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 Patients Do?

The onus for providing accessible communication should lie with the healthcare provider. However, people who need accommodations will need to be prepared to ask for accommodations 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 preferences for communication. This breaks it down to the two most common categories: those who prefer sign language and those who prefer captions.

The sign language group can also apply to specific sign language, 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 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.

 

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. As a consequence, an interpreter cannot join the 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 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. 

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 experience and outcomes."

Axelrod also shares that VRS does not provide a functionally equivalent experience for Deaf and hard of hearing patients. If interpreters are able to participate in telehealth sessions, they are able to simultaneously 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 interpretation may not be conceptually accurate.

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 chatbox 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."

 

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 chatbox? 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 pan out, select 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.

"Telehealth is here to stay. And it's time to ensure it's accessible to everyone."

What Healthcare Providers and Telehealth Platforms Must Do

The most important thing is that patients should communicate in the manner that's most comfortable. People who are bilingual 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 features. Better yet, invite patients to share their preferred method for communicating. For more guidance, refer to Hearing Loss Association of America guidelines for healthcare providers for video-based telehealth accessibility 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 "Journal of Health Communication," the study reveals deaf people are "seven more times likely to have inadequate health literacy compared to people who can hear." This needs to change.

Yes, the pandemic will come to an end. No question about that. But telehealth is here to stay. And it's time to ensure it's accessible to everyone. It's a matter of life and death.