March 30, 2022
To: The White House Office of Science and Technology Policy RE: Request for Information (RFI) on Strengthening Community Health Through Technology
Thank you for the opportunity to respond to this RFI. 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 using research and data. We will focus on people with disabilities who have used and would like to use digital health technologies and telehealth services. AFB has conducted two research surveys that examined the experiences of blind and low vision adults during the COVID-19 pandemic. We also conducted a handful of focus groups on hospital care and produced resources for healthcare providers. These studies illustrate some barriers that blind and low vision people face in accessing healthcare through digital health technologies and suggest the need for policies to improve digital health accessibility and inclusion.
Barriers:Most of the barriers that we will identify result from a failure to design and implement the respective technologies in a manner that is accessible to people with disabilities. Because these products are not designed to work well with assistive technology, people with disabilities are excluded from using them and discriminated against in accessing healthcare services, products, and facilities as both patients and healthcare workers.
Telehealth
Telehealth platforms are frequently inaccessible. Conducted in spring 2020, the Flatten Inaccessibility study found that of 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. The Journey Forward study, conducted in summer 2021, found that of 330 people who used telehealth, 57% reported that they found telehealth to be inaccessible in some way. Participants had difficulty: independently logging in; navigating the platform to make an appointment; reading information provided through the system, including by chat; privately communicating with their provider; and using buttons that were not properly labeled to be read by a screen reader.
EHRs and online ordering
Patients encounter many digital health interactions that may be inaccessible, not only telemedicine. 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.
Digital medical devices
Digital home medical devices are commonly used for diagnostics and monitoring chronic health conditions. Although we have not recently researched on this issue, we know 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.
Access to Health Information
In the 2021 Journey Forward study, we found that 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% did not agree that testing information has been accessible. 26% of screen reader users did not agree that vaccine information was accessible while 9% of screen magnification users disagreed.
Some examples of public health information 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, accessibility challenges may differ by the type of assistive technology (e.g., screen reader or magnification).
Online Vaccine Scheduling
Vaccine scheduling inaccessibility presented significant barriers. In Journey Forward, 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. This discrepancy suggests that many people faced or anticipated facing accessibility or usability barriers with scheduling their vaccine. One participant articulated what many blind people frequently experience: “I think it is assumed that someone else is available […] to help/look out for us. […] 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 97 screen reader users who attempted to schedule a vaccine appointment, 22% reported that the method they used to schedule the appointment was inaccessible and another 21% neither agreed nor disagreed. About 25% of 32 screen magnification users reported inaccessibility, with an additional 6% neither agreeing nor disagreeing. These numbers are not insignificant, and the Department of Justice (DOJ) has already settled with several large pharmacies that offered vaccines through inaccessible scheduling websites. It is unacceptable that so many providers failed to prioritize making vaccines accessible during a global pandemic.
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. Conducted in summer 2021, the Journey Forward study suggested that more blind and low vision people had tried to used telemedicine services, with approximately 70% of the participants having used telemedicine during the pandemic. We anticipate this trend continuing if the platforms used to deliver telemedicine are accessible.
User Experience:Accessibility is an integral component of the user experience. Designing for and implementing accessibility would resolve barriers to access and increase willingness to use these technologies. A current international standard for website accessibility is the Web Content Accessibility Guidelines. The principles in these guidelines apply to building telehealth platforms, mobile apps, EHRs, scheduling and ordering websites, online information sources, and more. The addition of audio output or vibrotactile features could make many medical devices accessible. In all cases, involving blind and low vision users in the user experience design as designers and paid testers would help medical device developers improve the usability of these products for patients and health workers with disabilities.
Proposed Government Actions:Immediate actions:
- The White House must incorporate digital accessibility when discussing digital inclusion and equity. For people with disabilities, accessibility complements broadband access, device ownership, and digital skills to ensure we achieve digital equity and inclusion.
- The National Telecommunications and Information Administration (NTIA) should target accessibility and access to digital accessibility skills. People with disabilities should be actively served through the $2.75 billion from the Bipartisan Infrastructure Law for digital equity and inclusion programs to help communities take advantage of broadband connections.
Actions that can be taken within 3 years:
- DOJ should issue enforceable website and application accessibility regulations, clarifying how and when public entities and businesses, including most healthcare providers, must make websites and applications accessible and provide effective communication.
- The Department of Health and Human Services (HHS) should issue regulations on digital accessibility when it updates the Section 504 regulations on programmatic accessibility and effective communication for providers receiving federal funding.
- The Food and Drug Administration (FDA) should provide guidance and standards for medical devices to be accessible nonvisually. A bill introduced in Congress offers a framework for requiring the FDA to enforce accessibility standards for medical devices. 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 should permanently cover audio-only telemedicine visits, which provide options for patients without accessible platforms, devices, or broadband. However, audio-only visits should not replace fully accessible digital platforms.
