Improving Health Literacy for the Blind

Posted on Apr 22, 2013
Improving Health Literacy for the Blind

About two years ago, I presented a competitive analysis of three consumer websites to a prospective client. Each site marketed a different pharmaceutical product to treat a condition called wet age-related macular degeneration, or wet AMD for short.

Wet AMD is a chronic eye disease in which abnormal blood vessels leak fluid into the center of the retina, causing the inside back wall of the eye to pucker. The result is visual distortion that gets worse over time, ultimately deteriorating a person’s eyesight if left untreated.

In preparation for the meeting, I tested three consumer-facing websites using the JAWS and NVDA screen readers and captured the outcomes on video. The results were predictable: the screen reader picked up neither the primary navigation nor the main content from any of the three examples. In fact, the sites were among the worst I’d ever tested in terms of accessibility.

The first site skipped over all the primary navigation (images with blank ALT attributes) and ignored the page content to read a disclaimer in the footer. The second website was in Flash and completely ignored by the reader except for two graphics read as “button” and “button,” respectively. The third website had one of those “three A’s” text manipulators and a hidden text DIV requiring a mouse event to activate. None offered anything of value to users of screen readers.

The responses from those in the room ranged from bemused to astonishment. Yet, as of the last time I checked, the accessibility of those sites (as well as that of my prospective client) was only marginally improved. A quick perusal of other vision-related pharma web properties reveals a similar story: poor accessibility, lack of meaningful content, little value. And remember, these are websites specifically targeted to reach patients who have difficulty seeing.

Something’s really wrong with today’s healthcare communications for people with vision disabilities, so perhaps it’s time to figure out what we as digital accessibility professionals can do about that.

Healthcare Communication for the Blind

As today’s healthcare industry strives to make medical records friendlier to patients, physician offices and hospital networks have increasingly adopted Meaningful Use measures to increase the connectivity between health data and personal devices. But what if the patient can’t access their information because they are blind or have low vision, or if they cannot receive content the same way as sighted patients?

Health literacy for blind patients is a critical issue, and it goes beyond simply treating vision-related disorders. Someone who is completely blind cannot detect blood in the urine nor conduct a melanoma self-check without assistance. Many EMR diagnostic tools remain largely paper-based, despite our healthcare ecosystem’s increasing reliance on digital interoperability, and the needs of blind patients are not as well communicated among medical staff as those who are sighted.

With this in mind, Anikto recently asked members of the blind and low vision community to take part in a very brief survey. The intention was to get an idea of how effectively today’s healthcare materials—whether they be printed brochures, television, radio, social media or commercial websites—communicated anything of value to this audience.

A brief disclaimer before evaluating the results:

  • This survey was conducted over four days and broadly defined on purpose
  • No pre-filtering of candidates was performed in advance
  • Participants did not provide specific details of their vision capability in order to participate
  • It cannot be conclusively verified that every respondent was blind or had low vision

In other words, pretty much every criticism Indi Young details about surveys could be applied to this anecdotal and unscientific representation of data. It’s merely a snapshot of thirty-six recent patients who self-identified as having a vision disability and chose to answer eight questions related to their experience.

With that being said, let’s take a look at the results:

How knowledgeable is your doctor’s office staff on handling people with low vision and blindness?

survey results of question 1

  • Extremely knowledgeable – 3.70%
  • Very knowledgeable – 3.70%
  • Moderately knowledgeable – 22.22%
  • Slightly knowledgeable – 29.63%
  • Not at all knowledgeable – 40.74%

According to respondents, there are gaps with regard to how doctor’s office staff members handle people with low vision and blindness. It would be interesting to do another survey that more closely investigates specific incidents.

During your most recent visit, did your healthcare provider give you information that was relevant and helpful?

survey results of question 2

  • Yes, definitely – 33.33%
  • Yes, somewhat – 48.15%
  • No – 18.52%

Nearly three-quarters of respondents seemed to have positive experiences when interacting directly with a trusted doctor or specialist. This wasn’t surprising, since such interactions are often more productive during private one-on-one sessions than with someone we perceive to be working for a system. This is pretty much the case whether or not a patient has a disability.

During your most recent doctor’s visit, did you find any of the materials in the doctor’s office helpful and easy to understand?

survey results of question 3

  • Yes, definitely – 8%
  • Yes, somewhat – 20%
  • No – 72%

A large majority of respondents did not find any of the materials in the doctor’s office helpful and easy to understand. Not surprisingly, most blind and low vision respondents had no use for printed brochures and posters in the doctor’s office. It could be speculated that their point of entry was the reception desk, a potential opportunity for better communications using Braille cards or mobile delivery.

How long has it been since your most recent visit with your healthcare provider?

survey results of question 4

  • Less than 1 month – 11.11%
  • At least 1 month but less than 3 months – 37.04%
  • At least 3 months but less than 6 months – 29.63%
  • At least 6 months but less than 12 months – 14.81%
  • 12 months or more – 7.41%

Most respondents had visited their doctors within the past year, with most of them having visited within a range of 1 to 6 months. This was slightly surprising, since studies demonstrate that many people with disabilities tend to put off doctor visits due to logistical reasons. For example, someone may want to avoid inconveniencing a friend or relative.

It was encouraging to see such a high percentage of respondents who had recently been to the doctor.

In the last 12 months, how many times did you visit your healthcare provider?

survey results of question 5

  • None – 0%
  • 1 time – 15.38%
  • 2 times – 38.46%
  • 3 times – 23.08%
  • 4 times – 11.54%
  • 5 to 9 times – 11.54%
  • 10 or more times – 0%

In the past 12 months, most respondents had visited their healthcare provider at least twice and some as many as 3 to 9 times. It was encouraging that a number of respondents had been to the doctor not only recently, but also regularly and with some frequency. Obviously, each case varies according to diagnosis, treatment options, comorbid conditions, etc.

In the last 12 months, how often did you make a health-related decision based on promotional material collected either through television, radio, or offline media?

survey results of question 6

  • Never – 88%
  • Sometimes – 12%
  • Usually – 0%
  • Always – 0%

Very few respondents made a health-related decision based on promotional material collected through television, radio or offline media. In fact, nearly 90% of respondents said they never do this.

The ineffectiveness of television and radio advertising was an interesting discovery. A blind colleague reported during a conversation that he never listens to commercial radio; his preference is Pandora channels or satellite radio.

How likely are you to take part in social media discussions related to health and wellness? Include your activities on Facebook, Twitter, YouTube, etc.

survey results of question 7

  • Never – 42.31%
  • Sometimes – 46.15%
  • Usually – 11.54%
  • Always – 0%

Respondents were nearly split down the middle between those who never use social media to make health decisions, and those who sometimes use Facebook, Twitter and YouTube for health and wellness. This was an unexpected dichotomy and an interesting avenue for deeper exploration. Is it the social media itself that’s the barrier, or the way content is presented?

How much do you agree with the following statement: “Most medical and health-related advertising reflects an understanding of what it’s like to be a blind or low vision patient.”

survey results of question 8

  • Strongly agree – 0%
  • Somewhat agree – 0%
  • Neither agree nor disagree – 11.54%
  • Somewhat disagree – 11.54%
  • Strongly disagree – 76.92%

A large majority of respondents disagreed with the statement that most health-related advertising reflects an understanding of what it’s like to be blind or have low vision.

This was the only question where participants were invited to offer a personal experience. One respondent made the excellent point that new bottle designs—such as syringes that help parents more accurate dose medication to sick children—might be wonderful for the sighted, yet for a parent who is blind they can be very dangerous.

Helping the “Quantified Selves” Who Cannot See

Through such government programs as Project Blue Button, wonderful things have been accomplished on behalf of patient literacy. However, it’s only a start in the wide spectrum of inclusively designed healthcare communication services.

Remember that for patients with disabilities to take ownership of their own health experience, they must have access to the same material equivalency as those who use all five senses. The digital healthcare ecosystem, which allows patients the ability to manage their health as never before, still has a ways to go before achieving inclusive comprehension.

I think we’ll soon see more innovative ways of utilizing physical space as a point of entry for healthcare communications. Glossy brochures may soon give way to new forms of distribution, not unlike how pharma reps are now carrying iPads as part of their sales toolkits. We may even see franchises within specific disease categories do a better job of recognizing the blind patient as a viable target segment.

This we can say for certain: while medical communities acknowledge that a better-informed patient is a more compliant one, the first step in making health information easy to understand is to ensure that their patients can actually retrieve it.