A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

People with disabilities may face a variety of challenges to accessing healthcare. Medical offices may not have accessible equipment or examination rooms, and some people with disabilities may need assistance such as sign language interpreter services, support with transferring from a wheelchair to the examining table, or assistance with printed forms. While people with disabilities can request accommodations to ensure their full access to healthcare, these accommodation requests may get lost in the system. The use of Electronic Health Records (EHR) may help to effectively document, process, and communicate accommodation requests. In a recent NIDILRR-funded study, researchers asked staff at a primary care center to describe their experiences processing disability accommodation requests in the EHR. The researchers wanted to find out how the staff learned about and supported the accommodation needs of their patients with disabilities, and what information would be most helpful for accommodating these patients. The researchers also interviewed a group of patients with disabilities who had recently visited the primary care center to find out how they set up accommodations with their healthcare providers.

Researchers affiliated with the Pacific ADA Regional Center held focus groups with a total of 35 staff from several health centers providing primary care services. The intake forms at these centers include 4 accommodation questions-- asking if the patient required a sign-language interpreter, support with mobility, support with low vision or blindness, or an extra-long appointment slot to accommodate a communication or cognitive disability. The staff who participated in the focus groups included both office staff who typically schedule appointments and coordinate logistics, such as receptionists and referral specialists, as well as clinical staff such as nurses, medical assistants, social workers, and one primary-care physician. During the focus groups, the staff were asked how they learned about accommodations or supports needed by patients with disabilities, how they provided these accommodations, and what information would help to improve the process. The researchers also interviewed 12 individuals with disabilities who had visited the center at least once in the past 6 months for an appointment and who were designated in their EHR as needing at least one accommodation. They asked the individuals about their experiences receiving needed accommodations during their care.

When the researchers looked at the data from the focus groups, they found that the center staff brought up 5 major themes related to serving their patients with disabilities:

1. Not knowing about accommodation needs in advance: Many of the staff said that they usually did not know about accommodation needs until shortly before the patient arrived. This was particularly true for clinical staff who might not see all of the details about a patient until they were reviewing the schedule and charts on the morning of the scheduled visit. While the office staff responsible for scheduling usually responded to interpreter needs ahead of time, other accommodations such as needed mobility support were not always recognized ahead of time.
2. Accommodation needs may have been present in the patient record, but information gaps existed: While the staff acknowledged that accommodation needs were often listed in the patient records, they cited gaps in communication between the office and the clinical staff, who primarily use different electronic  record systems. Accommodation needs were often recorded in the patient management system when appointments were scheduled with the office staff, but the clinical staff reported that they mostly reviewed only the patient’s medical record. Conversely, some clinical staff recorded accommodation needs at the time of a visit with a patient, but this information did not always make it back to the office staff when setting up future appointments in a separate system. Further, the referral specialists reported often not knowing that a patient needed to be referred to a provider who can provide certain accommodations, such as a wheelchair-accessible office, because the accommodation information was not always easily accessible in the electronic system they used.
3. Accommodations were often worked out on the fly: Because accommodation needs were often not known in advance, many of the staff shared examples of creative ways to develop accommodations in the moment, such as having a staff member provide sign language interpretation if an interpreter had not been secured, or shuffling patients so that a patient who uses a wheelchair could access a larger exam room. The staff were willing to provide these impromptu accommodations, but expressed that doing so sometimes impacted patient flow.
4. Staff learned about the accommodation needs of regular patients over time: The staff described getting to know patients who regularly attended appointments, and over time, would learn how to best accommodate these patients.
5. Staff recognized the value of indicating patient accommodation needs in advance: The staff generally agreed that it would be helpful for all staff to be notified of accommodation needs in advance. They suggested some strategies for integrating the information collected by office and clinical staff in order to facilitate communication. Generally, the staff expressed a willingness to improve strategies for accommodating patients with disabilities.

When the researchers looked at the interviews with patients, they found that the patients expressed two main themes:

1. Most of the patients did not remember entering their accommodation needs on the intake forms. Instead, they reported asking for the accommodations when scheduling appointments, or that their providers simply got to know them and how to best support them.
2. The patients expected to receive needed accommodations, even without a formal request through the intake process. Most of the patients were satisfied with their access to care, but some of them described challenges with communication, such as difficulty securing Sign Language interpretation, difficulty accessing printed forms, or difficulty receiving a longer appointment slot.

The authors noted that EHRs can serve as a useful tool for coordinating disability accommodations in healthcare settings. However, restructuring the EHR so that all staff have ready access to the same relevant information can help to close communication gaps and optimize the process of securing accommodations. The authors also recommended making accommodation fields flexible so that a variety of information can be entered and updated as needs change; ensuring that accommodation-related alerts stand out from other patient-related alerts in medical records; and educating staff about ways to best serve patients with a variety of disabilities.

To Learn More

The Pacific ADA Regional Center offers information and technical assistance to public entities such as health care providers and to people with disabilities about their rights and responsibilities under the Americans with Disabilities Act (ADA) including modification of policies, practices, and procedures; effective communication; accessible facilities; and much more.

The US Access Board has issued accessibility standards for medical diagnostic equipment and for accessible prescription drug container labels: https://www.access-board.gov/guidelines-and-standards/health-care

To Learn More About this Study

Mudrick, N.R., Breslin, M.L., Nielsen, K.A., and Swager, L.C. (2020) Can disability accommodation needs stored in electronic health records help providers prepare for patient visits? A qualitative study. BMC Health Services Research, 20: 958. This article is available from the NARIC Collection and free in full text from the publisher.