Making Telehealth Accessible for People with Disabilities
A conversation between Dr. Rupa Valdez, Associate Professor, University of Virginia, and Maria Town, President and CEO of AAPD
Introduction
The coronavirus pandemic has significantly altered the fabric of American life and changed the way many of us access goods and services, including healthcare. During the pandemic, we have seen the use of telehealth surge. Prior to the pandemic, from 11 percent of US consumers using telehealth in 2019 to 46 percent of consumers now using telehealth to replace cancelled healthcare visits. Providers have rapidly scaled offerings and are seeing 50 to 175 times the number of patients via telehealth than they did before. There are similar trends when we look at telehealth services provided via Medicaid and Medicare.
Policy changes at the federal and state levels have made it easier to deliver telehealth during the pandemic, and there are a number of efforts to make these changes permanent. While telehealth has created increased access to care for many, it also has the potential to exacerbate health inequities for people with disabilities if attention is not paid to its design, delivery, and the policy context that surrounds it.
Dr. Rupa Valdez’s research focuses on understanding and supporting the ways in which people manage health at home and in the community. She’s examined telehealth programs as part of her broader body of work. Here, she discusses how she came into this work, findings from her research, and design recommendations for more equitable health technologies in the future.
Town: You’ve been researching and writing about how increased use of telehealth in recent years, including during the pandemic, may lead to exacerbated inequalities for people with disabilities. What led you to focus on this topic?
Valdez: In all honesty, it was a combination of two things. Since graduate school, I’ve been looking at the intersection of health information technology, including telehealth, and underserved populations. My dissertation research focused specifically on understanding how cultural factors understood and accounted for in the design of these technologies. Most of this early work focused on race and ethnicity. In the midst of finishing this dissertation work, I acquired additional disabilities which have had a significant impact on how I interact with technology. Beginning to think about usability and usefulness of these technologies for the disability community was in a way a natural intersection of the work I was already doing and the reality I was already living. This work focused on the intersection of health IT and disability continues to be an important component of my work including during the pandemic.
Town: Where have you looked to learn about the personal experiences that people have had with telehealth?
Valdez: As a community-engaged researcher, I sought out multiple ways of looking into these experiences. Over the years I’ve established collaborations with local centers for independent living and nonprofits who serve the disability community and who have been able to provide invaluable insight into the experiences of our community. I’ve also spent significant time reading and making sense of conversations among people living with specific disabilities and chronic health conditions on social media. Much of my understanding has also come from interviewing, surveying, and otherwise engaging directly with people who take part in our research activities. We sometimes ask those engaging in our research to journal about their experiences with technology or to show us how they use it and the challenges they have in doing so. This way we gain a deeper understanding of how disability, technology, and broader life circumstances interact.
What have you found?
Even though broadly speaking there are legal protections and guidelines in place to ensure accessibility of health IT, many such technologies remain largely inaccessible for the disability community. This remains true for a wide range of health IT that seeks to connect patients to healthcare providers, informal caregivers, as well as families and friends. In addition to not always being usable, such technologies are often not designed specifically with the needs of the disability community in mind. For example, most telehealth technologies only permit the patient and provider to interact in 2-way communication. For some people with disabilities, it is essential to have additional individuals present such as a qualified interpreter, personal care assistant, or family member. Of course during the pandemic, these individuals may not be physically present with the person seeking care. Beyond such considerations is the secondary impact of delayed care resulting from the widespread transition to virtual encounters. For me personally and for many others, ongoing therapies or diagnoses requiring in-person assessment have been delayed. This reality, in turn, has had a significant impact on physical, mental, and emotional health.
Are there any common assumptions about either telehealth or about disability that you’ve found need to be challenged?
One common assumption is that the movement to virtual encounters has largely positive benefits for the disability community. In some cases, this is certainly true. For example, the option to engage in a telehealth appointment can reduce the work of coordinating transportation and caregiver assistance as well as reduce interactions with clinical spaces that lack sensory-friendly spaces and accessible medical equipment and bathrooms. Although this is understandably seen as a positive, in some ways it also needs to be seen as a call to action to fix the very real barriers that people with disabilities face in accessing in-person care. Moreover, it is essential to simultaneously see the accessibility challenges inherent to telehealth and to address these challenges by appropriately designing, implementing, and writing policies about it.
You suggest applying a framework of intersectionality to better address needs of minority healthcare consumers. What could this look like?
Having a comprehensive view of health equity that begins from a perspective of intersectionality is essential. Many marginalized communities face similar challenges and as such, there is an opportunity to identify common reasons for health inequities. For example, lack of adequate broadband and technology access are common among multiple underserved communities including people with disabilities, racial and ethnic minorities, and people with lower levels of education. At the same time, communities may have both unique and overlapping views on what an appropriate solution or set of solutions might look like. For this reason, it is important to have advisory groups or — -better yet — -deeply engaged community partners who as a collective identify with a wide range of backgrounds and provide multiple perspectives. Solutions can then be developed which simultaneously lend urgency to common challenges and meaningfully respond to the specific needs of each community.
What are key design considerations that you recommend to improve the accessibility of telehealth?
I often talk about three buckets of need that should be accounted for when designing appropriate telehealth technologies. First is compliance with existing standards and best practices, both in terms of those that are disability-specific (e.g., web content accessibility guidelines) but also those that more generally focus on user-centered design. Second, it’s imperative that these technologies are compatible with assistive technologies, including both those that are external devices and accessibility features native to operating systems. Third, such technologies must be designed to be responsive to individual accessibility needs. For example, they should allow users the option of multiple communication modes so that they can select one that is most accessible to them. This should include the option to send text-based messages during asynchronous telehealth exchange and the option to send voice-based messages through asynchronous patient portals. Design, of course, is only a first step to ensuring accessibility. The ways in which the technology is implemented by healthcare systems and the ways in which policy is written to govern when and how it could be used will also be instrumental in determining how the movement to telehealth will impact the disability community.
What would you say to a person living with disabilities who is struggling with accessing telehealth?
Many of us who identify as disabled are all too familiar with having to advocate for ourselves, often in the context of physical spaces and in-person services. Telehealth is no different. Acknowledging that people with disabilities can experience potentially biased views from healthcare providers, it is still essential to advocate for your needs and any accommodations that would improve a telehealth encounter for you. In the meantime, if you continue to have difficulties with telehealth, consider finding a healthcare provider who may be able to appropriately see you in person or communicate via the phone. Alternatively, you may also want to consider finding someone in your social network who may be able to provide assistance with either setting up and/or navigating the technology-based aspects of telehealth. Beyond this, if your needs are not being met, you may consider filing a complaint.
