AFB Digital Health Equity Letter to Dr. Allister Martin

March 22, 2022

Allister Martin, MD White House Fellow Office of the Vice President/Office of Public Engagement The White House

Dear Dr. Martin:

Thank you for the opportunity to participate in the White House Health Equity Forum: Broadband Access and Telehealth Equity on Wednesday, March 16, 2022. The American Foundation for the Blind (AFB), is a national nonprofit that advocates for a world of no limits for people who are blind or have low vision by mobilizing leaders, advancing understanding, and championing impactful policies and practices using research and data. We appreciate this Administration’s commitment to equity; however, at AFB, we firmly believe that we cannot truly work toward equity without including people with disabilities, and as this pandemic has highlighted, digital accessibility in healthcare is essential for equitable access to care. With the data outlined in this letter, we urge the White House to prioritize accessibility within its health equity and inclusion agenda and take actionable steps toward improving digital health equity for people with disabilities.

Summary of Actions

We call on this administration to act for digital inclusion in healthcare through the following actions:

• Incorporate digital accessibility into inclusion and equity messages and priorities.
• Issue new enforceable digital accessibility regulations.
• Update existing accessibility regulations, such as those implementing Section 504 of the Rehabilitation Act, to include digital accessibility.
• Make medical devices accessible nonvisually.
• Permanently reimburse telehealth expenses, including audio-only telemedicine.
• Actively serve people with disabilities in digital skills, equity, and inclusion programs.

The Scale and Impact of Inaccessible Digital Healthcare Delivery

AFB has conducted two research surveys that examined the experiences of blind and low vison adults during the COVID-19 pandemic. Prior to the pandemic, we also conducted a handful of focus groups with residents of West Virginia on accessible hospital care and produced resources for healthcare providers. These studies illustrate some of the barriers that people who are blind or have low vision face in accessing healthcare through digital means.

Telehealth platforms are frequently inaccessible. Conducted in spring 2020, the Flatten Inaccessibility study found that approximately 30% of the participants who responded to questions about healthcare reported having used telehealth services. Of those 285 blind and low vision participants who had used telehealth to meet with their healthcare provider, 21% reported the telehealth platform was not accessible with their assistive technology. Although the samples are not the same, data from the Journey Forward study, which was conducted in summer 2021, suggest that more people had tried to used telehealth services, with approximately 70% of the participants having used telehealth during the pandemic. Of the 330 who used telehealth, 57% reported that they found telehealth to be inaccessible in some way. Participants had difficulty:

• navigating the platform to make an appointment;
• independently logging in;
• reading information provided through the system, including by chat;
• privately communicating with their provider; and
• using buttons which were not properly labeled to be read by a screen reader.

With more people who are blind or have low vision attempting to use telehealth, it is deeply concerning that over 50% find the telehealth experience to be inaccessible. Many of the issues reported could be solved through adherence to Web Content Accessibility Guidelines, an international accessibility standard.

We also found that about 2 in 3 participants who had used telehealth had communicated with their provider via a phone-call. Although we did not investigate why or when they used one method over another, this data point suggests that audio-only telemedicine is an important option for people who are blind. Even so, audio-only options must be considered a supplement to, not a replacement for, fully accessible digital telehealth platforms.

These experiences are not limited to blind people, of course. Deaf and deafblind people experience significant difficulties accessing qualified interpreters and captioners during telehealth visits, and many people with motor and cognitive disabilities also need digital platforms to be designed for accessibility and usability. Deaf patients frequently experience the inability to connect remote medical interpreters or real-time captioners through the secure telehealth platform, the inability to see the provider on video, and other technical issues, including insufficient audio or video quality. Moreover, while there are few studies directly examining the telemedicine experiences of people with other disabilities, anecdotal reports suggest that the vast majority of DeafBlind people are completely unable to independently utilize telemedicine as it currently exists.

These data focus primarily on online telemedicine visits between a patient and their provider, yet patients encounter many other digital health interactions as well. Electronic health record accessibility has been the subject of concern for both consumers and health workers with disabilities. Furthermore, in the Journey Forward study, 38 participants could not use their pharmacy or provider’s app or website to order their medical supplies or prescription because the app or website was not accessible.

Another concern is the lack of available accessible digital home medical devices that are frequently used and related to effective telehealth. Although we have not recently conducted research on this particular issue, we have seen that blood glucose, cardiac activity, and blood pressure monitors are just a few examples of common medical devices that may be inaccessible and present significant difficulties for blind users. The addition of audio output or vibrotactile features could make most devices accessible while including blind and low vision users in the user experience design would help medical device developers improve the usability experience. Access to information about the pandemic, COVID-19 testing, and the vaccine were also frequent concerns:

• 14% of respondents did not agree that they had full access to COVID-19 pandemic information (e.g., the number of cases in their community) at the time of the survey.
• 19% do not agree that testing information has been accessible.
• 26% of screen reader users do not agree that vaccine information was accessible while 9% of screen magnification users disagreed.

Information inaccessibility is significant because information generally can be presented in textual formats augmented with described graphics and properly formatted tables. A couple of examples of public health information presented visually that may not be accessible to a blind or low vision reader include maps and flowcharts representing a community’s risk level with color only and social media posts conveying testing locations in image format. Additionally, the last data point suggests that accessibility challenges may be greater for individuals who use screen readers, which convert computer code into audio output, rather than screen magnification. Individuals’ choice of assistive technology (e.g., screen reader or magnification) is often related to the type and degree of their disability, and someone who has more usable vision may be more likely to rely on magnification.

Vaccine scheduling accessibility was another topic of much concern once the vaccine was available. In Journey Forward, we sought to better understand individuals’ experiences. We found that about 47% percent of those who received a vaccine had had someone else schedule the vaccine for them while 34% scheduled the vaccine for themselves or another person. This discrepancy suggests that many people faced or anticipated facing accessibility or usability barriers with scheduling their vaccine. We also know that our sample population was more likely to have access to and use technology on a regular basis than the average person who is blind or has low vision. One participant articulated what many people who are blind or have low vision frequently experience: “I think it is assumed that someone else is available (friend, family, whoever) to help/look out for us. Some of us have people to do that. Many people do not. I would rather not have to ask someone to help me but sometimes it is just easier/quicker. It doesn't solve the bigger problem.” It is imperative that websites and digital platforms be accessible, so that people can be independent.

Of the 97 screen reader users who attempted to schedule a vaccine appointment, more than one in five (22%) reported that the method they used to schedule the appointment was inaccessible and another 21% neither agreed nor disagreed that the method was accessible. About a quarter of the 32 screen magnification users reported experiencing inaccessibility, with an additional 6% neither agreeing nor disagreeing. These numbers are not insignificant. While some individuals found the system that they used to be accessible, there has been great discrepancy across the country, and the Department of Justice has already settled with a number of large pharmacies that offered vaccines through inaccessible scheduling websites. It is simply unacceptable that so many pharmacies failed to prioritize making vaccines accessible in the midst of a global pandemic.

Indeed, many of the barriers we are sharing with you are the result of different entities deprioritizing the digital inclusion needs of people with disabilities. As a result, inaccessible digital health information, platforms, and services create inequity for people with disabilities in accessing healthcare safely, quickly, and independently. It is imperative that coordinated efforts be taken to increase accessibility and equity in telehealth. We strongly encourage the Administration to take the following actions to improve telehealth equity:

• The White House must prioritize digital accessibility in its messaging and when discussing digital inclusion and equity. The COVID-19 pandemic made apparent the necessity for everyone to have broadband access, device ownership, and digital skills. For people with disabilities, accessibility is an additional need to ensure we achieve digital equity and inclusion.
• The Department of Justice (DOJ) should issue enforceable website and application accessibility regulations by the end of the current administration. These regulations would clarify how and when public entities and public accommodations, including most healthcare providers, must make their websites and applications accessible and provide effective communication.
• The Department of Health and Human Services (HHS) should issue regulations on digital accessibility, including telehealth, if and when it updates the Section 504 regulations to ensure programmatic accessibility and effective communication for providers receiving federal funding and their patients with disabilities.
• The Food and Drug Administration (FDA) should provide greater guidance and standards for medical devices to be accessible nonvisually. The Medical Device Nonvisual Accessibility Act, which has been introduced in Congress, would require the FDA to promulgate and enforce accessibility standards for Class II and III medical devices and provides one framework for improving accessibility. FDA and the Access Board should go as far as possible under their current authority to make devices accessible.
• The Centers for Medicare and Medicaid Services (CMS) should permanently cover audio-only telemedicine visits, which provide options for patients without accessible platforms, devices, or broadband. However, we urge providers and policymakers to remember that audio-only visits should not be an alternative to fully accessible digital platforms.
• In implementing the Bipartisan Infrastructure Law and its other authorities, the National Telecommunications and Information Administration (NTIA) should raise the profile of accessibility and access to digital accessibility skills. The NTIA has been entrusted with $2.75 billion for digital equity and inclusion programs to help communities take advantage of broadband connections. People with disabilities, including older adults with disabilities, should be actively served through that funding.

We appreciate your attention to healthcare equity through digital inclusion. We know that accessibility barriers have impeded access to care long before the pandemic, and the rise of telehealth has created both opportunities and additional barriers. If you have any additional questions about the information and actions presented here, please reach out anytime.

Sincerely,

Stephanie Enyart, J.D.
Chief Public Policy and Research Officer