By Tammy Coutts (MEDITECH), Vice Chair of the EHR Association User Experience Work Group, and Libby Eddings (Oracle Health), Member of the User Experience Work Group

Disability isn’t a lightbulb that switches on and off. Nor do symptoms travel in a straight line. In fact, the only certainty about disabilities is they will, at some point, impact nearly everyone. 

This is why inclusive EHR design must start from a point of understanding that ability and disability exist on a spectrum. Doing so is the first step to fully eliminating accessibility barriers and empowering healthcare professionals and patients alike to utilize these tools to their fullest extent.

The Disability Spectrum

Disability tends to be viewed through a binary lens. Someone is either disabled or they are not. They are blind or they can see. They are deaf or they can hear. 

The reality is that disabilities come in all shapes and sizes, and symptoms and presentations exist on a sliding scale of severity and permanency.

Not every person who is hearing impaired is completely deaf. Blindness can mean low vision rather than total vision loss. Reliance on a wheelchair doesn’t mean an individual has no use of their legs. Similarly, a broken bone, cancer, or other illness or injury can cause temporary disability, while conditions like multiple sclerosis, Parkinson’s, and diabetes can mean regularly moving between “abled” and “disabled.”

This reality is the inspiration behind the movement to normalize viewing disability as a spectrum. Instead of a one-size-fits-all, black-and-white definition, disability should be defined as:

• Temporary, affecting an individual for a short period of time. These are typically situations, illnesses, or injuries that keep someone from participating in routine activities with their full ability but from which they will eventually recover. 
• Permanent, affecting the individual for life. This could be an illness or injury from which there is no recovery, or it could be present from birth.  
• Episodic, permanent conditions (e.g., diabetes and multiple sclerosis) for which there are no cures and severity changes from one day to the next. People with episodic disabilities like vertigo, migraines, and some forms of mental illness like PTSD and bipolar disorder experience random periods of fluctuating good health and ill health.

Some also include situational and dynamic disabilities as part of the disability spectrum. Situational disabilities are those that are affected by someone’s environment or circumstances. It could be struggling to hear or see in chaotic situations, trouble seeing a screen in low light, or difficulty hearing directions or other information in noisy or crowded rooms. Like episodic disabilities, dynamic disabilities randomly shift in severity or fluctuate over time, such as a flair-up of a chronic illness or chronic pain. There is no discernible pattern to these exacerbations. 

Why it Matters to EHR Design

EHR design has evolved over the years with features and capabilities designed to aid those with specific disabilities, such as screen readers for the visually impaired and drop-down menus and drag-and-drop features for those who struggle with keyboards. However, as we discussed in a previous blog, features that make technology user-friendly for most healthcare professionals with disabilities create obstacles for others.

The problem stems from accessibility designs that are based on a binary definition of disability. A better approach is to consider all the challenges design elements create for individuals with a range of issues and build functionality that allows for multiple options. For example, keystrokes, mouse clicks, and voice commands can be used to achieve the same outcome regardless of the type or severity of dexterity issues – whether those issues are permanent, temporary, or episodic.

By stepping back and observing how users access and interact with health IT in the real world – if, how, and when speech recognition or the keyboard is used versus the mouse, for example – it becomes possible to identify design elements that overcome obstacles at any point along the spectrum. When that understanding is incorporated into the design and tested by people with a range of disability types to ensure efficacy, it brings us closer to truly inclusive EHRs and other health IT – which ultimately benefits even those who do not define themselves as having a disability. 

Like using automated doors when our hands are full or closed captioning on the television when the volume is low or the room is noisy, we all benefit daily from features designed to address disability. The EHR is no different. It could be a nurse trying to administer medications in the chaos of the emergency department, a physician needing to log into the system to enter orders in a dimly lit room, or a patient trying to log into their portal while juggling a crying infant. Accessibility features can benefit them all.

Inclusive Design is the Goal

Advances have been made in EHR accessibility, but there is a long way to go before the technology is truly inclusive. We don’t have all the answers yet. But understanding the reality of living with a disability is a powerful first step.

By moving away from a binary definition of disability and instead viewing it as a spectrum, it becomes possible to design inclusive EHRs that provide value to everyone regardless of where their symptoms fall along the scale on any given day. In doing so, EHR developers will deliver features and functionality that deliver convenience and benefit to all users, regardless of ability or disability.

Watch this space for updates from the EHR Association’s User Experience Work Group as we continue our work on advancing disability inclusion in health IT. Meanwhile, if you have insights or exclusion examples you’d like to share, please reach out to us at staff@ehra.org.