January 26, 2011

What people living with disability can teach us

The Pew Internet Project recently issued a short report noting that people living with disability are less likely than other adults in the U.S. to use the internet: 54%, compared with 81%. The first question many people ask when they hear that is, Why? The second is, What can be done? The third is, or should be, What can we learn from this?

Why?

Statistically speaking, disability is associated with being older, less educated, and living in a lower-income household. By contrast, internet use is statistically associated with being younger, college-educated, and living in a higher-income household. Thus, it is not surprising that people living with disability report lower rates of internet access than other adults.  However, when all of these demographic factors are controlled, living with a disability in and of itself is negatively correlated with someone’s likelihood to have internet access.

Just 2% of American adults say they have a disability or illness that makes it harder or impossible for them to use the internet. Eight percent of people living with a disability say this is true. However, this estimate is based on a telephone survey, which does not include people who are not able to use either a landline or cell phone due to hearing loss. If you are interested in more details on this issue, Evans Witt, CEO of our polling firm, Princeton Survey Research Associates International, recommends the following article:

Inclusion of People With Disabilities in Telephone Health Surveillance Surveys,” by Susan Kinne, PhD, and Tari D. Topolski, PhD [PDF]

What can be done?

Three articles covering our report did a nice job of laying out some answers to this question. Please note that my job is to provide data points like the ones listed above so other people can map solutions. Neither I nor the Pew Internet Project takes positions on policy issues or makes recommendations about how to “fix” problems that some people see when they encounter our objective data.  I’m providing the following links as context for discussion.

Pew: Disability or illness hinders many Americans from using the Internet,” by Alex Howard, Gov20.govfresh.com

For the disabled, just getting online is a struggle,” by Wilson Rothman, MSNBC

What are the barriers to the Internet for people with disabilities?” by John Moe, Marketplace Tech

The best quote came from Tom Foley of the World Institute on Disability, who talked in the Marketplace piece about the expense of screen readers, Braille displays, and other accessible technologies. When asked why broadband is important to people living with disabilities, he simply says, “I’m a blind guy… I can do research online. I read the Pew report when it was emailed to me. Twenty years ago I couldn’t do that as a blind person. But with access to the internet and access to accessible technology, all those opportunities are open to me…I can become better educated, I can get a better job, I can pay my mortgage, I can pay my taxes, and I can send my kids to college.”

What can we learn?

Dean Karavite, Lead Human-Computer Interaction Specialist at the Center for Biomedical Informatics, Children’s Hospital of Philadelphia, was one of the first people I emailed when I released this report. We had met at the Connected Health Symposium in Boston, where he discussed emerging technologies for people with disabilities.

His response intrigued me:

“My first reaction to the report was depression, but I think that’s a good thing. The data is sobering. I may be wrong, but my interpretation is the ‘digital divide’ is alive and well for people with disabilities…

“[In an upcoming project] we will be applying HCI/usability methods to an assessment of the contemporary PHR (patient portal – as provided by HIT vendors linking patient to physician) to support the requirements of people with disabilities. The foundation of this work is to create detailed use cases/scenarios (what are the important tasks people need to perform?) and couple these with detailed user profiles.

“Up until now I was, in my mind, concentrating on types of disabilities for our profiles, but your report has me thinking more broadly (and will be an invaluable resource). For example, in assessing the current PHR, we need to include response time over dial up. When I worked at IBM we actually had a standard for system performance (I believe it was a screen had to download at 7 seconds on a dial up line with a 56k modem). Sadly, I thought this type of thing was no longer needed, but obviously not. My own PHR with my doctor’s office takes about ten seconds per page on a very fast cable modem. However, I think the lesson here is beneficial to everyone – create applications that are lean, efficient and fast. A person with a disability and a 56k modem has similar requirements to someone using a mobile device – performance![emphasis added]

That insight reminded me of a bedrock usability principle from the early 2000sany improvement made to a website’s navigation that favors older users also benefits younger users. Everyone completes tasks faster if the navigation is clear.

I would love to see Pew Internet data spark more insights, conversations, and stories like the ones listed here. Please let us know if you have questions we can address in our research!

Join the conversation about this commentary on e-patients.net.