Who is Being Excluded from DEI?

The history of exclusion of diverse populations across many sectors is one that is well documented. While globally there are programs and laws in existence to prohibit exclusion, there is still a long way to go in terms of true equity for diverse populations. DE&I programs are most often focused on improving opportunities for women and people of color, but people living with disabilities are often left out of the DE&I discussion.

According to the World Health Organization (WHO), an estimated 1.3 billion people worldwide experience significant disability. This represents 16% of the world’s population, or 1 in 6 of us. In the US, data from the Centers for Disease Control and Prevention (CDC) shows that 1 in 4 adults have some type of disability.

That represents 27% of the population! These numbers are staggering and demonstrate an opportunity for insights organizations to expand their horizons! Oftentimes, researchers are seeking the most well spoken or knowledgeable patients to participate in studies, but they may not represent the true target audience. It is time to expand our horizons!

Disabilities include physical, mental, intellectual or sensory impairments which impact daily living. At Rare Patient Voice, many of our 130,000+ patients and caregivers live with visible and invisible disabilities.

The opportunities for these individuals to participate in market research is increasing exponentially with the interest in DEI and accessibility coming to the forefront, but including people with disabilities in all types of research is important. Not only is this an opportunity to do good in the world by ensuring products and services are appropriate for people with all abilities, it is also an opportunity for clients to expand their target markets.

Researchers have an opportunity to be at the forefront here. Including people of all abilities in research ensures that your data are representative which in turn means your messaging, products, and strategies will be on point for your clients.  

If you ask a patient with a movement disorder what types of products need improvement to make their days easier, the list is nearly endless. From the time they wake up in the morning to the minute they put their head on the pillow at night, the world is not built to meet their needs, so they must make do with what is available.

Look at the various tools, appliances, and devices that we use every day and think of how these things can be made accessible to all people. Matthew Shapiro from 6 Wheels Consulting sees it this way, “If you are trying to seek the most diverse research respondents possible, why are you not reaching out to people with disabilities who represent the most diverse minority group in the country? Researchers need to do a better job finding the right people and setting up a structure where people with disabilities can share insights.” 

Whether your research is disability focused - for example, usability testing of a device for people with mobility challenges, or a more general topic for which you are seeking diverse insights, there are so many important considerations.

Here are a few to start: 

1. Are your website and recruiting materials inclusive of those with disabilities? Can they see themselves in the graphics and are the accessibility features up to date? 
2. Have you designed your study materials (e.g., surveys, materials for review) in an accessible format for those with a variety of disabilities? 
3. Have you written your materials in plain language to ensure that even those with low health literacy are included? 
4. For face-to-face research, is your facility fully accessible to those with disabilities?
5. Have you asked what accommodations, if any, your respondents might need? 

These questions just scratch the surface, but they are a good starting point!

The opportunities to include patients with disabilities in accessibility research are almost endless! Travel and transportation accommodations are significant areas of concern for people living with disabilities but dig a little deeper and you will find so much more.

Accessible vehicles, makeup for people with a variety of skin conditions, power tools and makeup brushes for those with fine motor skill challenges, slip on shoes and accessible clothing for those with movement disorders, sinks that can raise and lower to meet wheelchairs, televisions, doorbells and smoke alarms that connect to hearing aids, the list goes on and on! 

The next time you are testing a concept for your client, consider suggesting an additional focus on accessibility. Are you testing a new device? Think about including people with vision or fine motor skill impairments. Are you testing messaging? Consider including those with dyslexia or ADHD to ensure the message resonates.

If the messaging or device works for everyone, that is another 27% of potential sales for your client. There are many reasons this is exciting from a research perspective both for researchers and clients - but higher sales for your client is a bottom-line winner. Doesn’t that sound like a good thing for everyone?