Published On August 13, 2021
One morning in April 2020, when Lisa Iezzoni heard that her friend Michael, a man with quadriplegia for whom she was the health care proxy, had just developed a high fever, she immediately suspected he had contracted COVID-19. By noon that day, Iezzoni and Michael were able to meet with his primary care physician via Zoom to discuss a treatment plan. “I was 250 miles away,” says Iezzoni, a researcher at Massachusetts General Hospital’s Health Policy Research Center. “So it was amazing that, two hours after his temperature spiked, we were able to meet with his doctor to talk about the goals for his care.”
Iezzoni has spent nearly three decades studying how people with disabilities interact with the health care system, and she believes telemedicine has the potential to improve their care. Yet the potential promise of the technology often founders on issues of access and ease of operation. “With the pandemic, telemedicine has taken off like a rocket,” Iezzoni says. “But just as some kids with disabilities have been left way behind when schools have implemented Zoom for teaching, the same is true for people with disabilities relating to their medical care.”
Telemedicine presents several kinds of obstacles for patients with disabilities. Some involve digital literacy skills, and others are related to motor, visual and auditory capabilities needed for many telemedicine platforms. For instance, Michael uses a sip-and-puff, a device that lets him operate his tablet computer through his breaths. However, the Zoom platform frequently times out before his commands register. There are also socioeconomic barriers for those who may lack a computer and Wi-Fi access. A 2016 Pew Research survey found that about 25% of adults with disabilities had access to broadband internet and multiple devices compared to 42% of those without a disability.
Getting past such barriers will require a combination of policy changes, design and implementation, say the authors of an article in JAMIA, a journal of informatics for health and biomedicine. “Changing telehealth design first requires widespread awareness on the part of designers, clinicians, health system leaders and policymakers,” says Rupa Valdez, the paper’s lead author and an associate professor of public health and engineering systems at the University of Virginia. In the article, Valdez and her co-authors walk through several design recommendations that could make telemedicine platforms more inclusive, such as ensuring that a proxy interpreter or family member can join virtual doctor visits, compatibility with external assistive devices and the integration of user-centered design principles.
When telemedicine is poorly designed, it can be frustrating and potentially life-threatening for the user. “If a person can’t figure out how to use a technology intuitively, then the designer didn’t employ human-centered design principles,” says Jules Sherman,an industrial designer, design educator and director of the Biodesign Program at Children’s National Hospital in Washington, D.C.
Difficulties can also arise from a lack of user training. Several hospital systems now offer tutorials and help lines to assist people with disabilities who have problems with telemedicine. For example, the Center for Vulnerable Populations at the University of California, San Francisco has created video tutorials in several languages explaining how to download and log in to Zoom.
The U.S. Department of Health and Human Services (HHS) has called for several changes that could benefit people with disabilities. HHS recommends that telemedicine platforms make patient support systems available and that telemedicine websites be compatible with screen readers, software that helps visually impaired users by reading text aloud. Still, says Valdez, hurdles remain. Although recently introduced legislation would help people pay for telemedicine access technologies, which can cost thousands of dollars, many insurance companies don’t yet cover them as durable medical equipment.
Sherman and Lee Sanders, chief of general pediatrics at Stanford University, teach a course on human-centered design called “Designing Healthcare for Social Justice.” In a recent semester, they focused specifically on how to address health disparities within telemedicine. One insight that emerged from the course was that although access to technology is an important first step for underserved communities, it’s also essential that the technology be designed in a way that is inclusive of diverse users—such as those with different abilities, low literacy skills and limited privacy at home. “If you have access to something that isn’t designed with inclusivity in mind, then access doesn’t matter,” Sherman says. “An unthoughtful user experience just adds another barrier to health care.”
With the widespread adoption of telemedicine that occurred during the pandemic likely to persist, conversations about accessibility and efficacy will only become more important. “My hope is that part of the solution will be co-produced by patients and their caregivers,” Sanders says. “Especially from people in under-resourced communities whose voices are often unheard.”
Stay on the frontiers of medicine
- Telemedicine and its Discontents
Not everyone stands to benefit from digital care. How can we change that?
- Telemedicine’s Moment
The ascendance of virtual and distanced care has taken place with extraordinary speed. Lee Schwamm discusses which innovations are likely to stick and some bumps in the road ahead.