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The Breastcancer.org User Experience

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I’ve been working with Breastcancer.org since the summer of 2000. It has been an amazing journey.  I’ve watched this website grow from humble beginnings—a few dozen visitors a day—into the most popular breast cancer website in the world.

It is a neverending job to keep a world-class website up and running.

There’s expensive hardware that has to stay running all day and all night, every day, year after year. There’s a constant stream of new breast cancer research and information that has to be reviewed, written about, and published to the website. New Internet browser software, operating systems, computers, and mobile devices come to market all the time and the website has to be tested on these. The Breastcancer.org brand has evolved, and the website’s graphic design needs updating from time to time. The languages of the web (HTML and CSS) continue to evolve—offering new benefits but also new complexity. New Breastcancer.org website features are constantly being concepted, designed, built, and launched to help the organization fulfill its mission and reach new audiences. Being a nonprofit organization, Breastcancer.org must also provide for its own existence through fundraising and sponsorships.

The devotion and hard work that goes into running this website is awe-inspiring, and it’s not as easy as the Breastcancer.org team makes it look.

One of the ways I help out is to lead the usability efforts for Breastcancer.org. In my industry, usability is sometimes referred to as “the last 2 feet.” As in, when a person is sitting at their computer with their monitor 2 feet in front of them, does the website actually make sense?

While designing websites can seem a lot like print graphic design, it’s much closer to product or industrial design. Websites are not unlike cars. Everyone wants a car that is sleek, shiny, and painted a pretty color, but if the thing doesn’t drive, no amount of visual dazzle is going to make up for it.

The automobile industry has been around for over a hundred years, and in that time it has matured quite a bit. A person can pretty much hop into any car in the world and be driving down the road within a few seconds. This is because car designers follow the same standards for the features that affect the car’s motion down the road: steering wheels, instrument panels, gear shifts, and so on. Imagine if it was left to the whim of each car manufacturer whether to put the gas pedal on the right or left? What if in some cases they weren’t pedals at all, but were levers that had to be worked by hand? What if some cars had tiny little arrow buttons instead of steering wheels?

Sounds like a mess, right?

But this mess is exactly where the web is today. Left to the whims of each designer are the features that affect the user’s motion through a website: hyperlinks, form input fields, submit buttons, and so on. The web has precious few conventions and standards, and those that exist are entirely optional for the vast majority of websites.

Just as the automobile industry learned by watching what worked and what didn’t work, a professional website team must also learn through observation.

While surveys, focus groups, and interviews are valuable feedback channels, they cannot effectively measure website usability. Similarly, crash safety ratings for automobiles don’t come from people’s opinions about how safe they think a car might be… they come from crash tests!

Website usability testing is essentially a crash test… meant to determine how easily the user “crashes” when performing important tasks and how well they can recover from these run-ins with poor interaction design.

User testing is always done individually, with one participant and one researcher in the room. The sessions usually last 90 minutes or so and include 5-7 tasks for the user to complete on the website. These tasks should represent common and/or important user goals.

Some of the tasks we’ve tested over the years at Breastcancer.org are:

  • registering and posting on the Discussion Boards
  • signing up to receive Email Updates
  • participating in an Ask-the-Expert Online Conference
  • submitting a support request message
  • finding new research on an important topic

User testing on the Breastcancer.org website presents a number of challenges.

First off, it is really important to emphasize to user testing participants that we are testing the website, not them. If they get confused or frustrated, it isn’t because they’re not smart enough to figure something out, it’s because we failed in our jobs of designing and building an intuitive website. But many participants still feel awkward or embarrassed when they can’t complete a task.

Another challenge in our research is the “roller coaster” that people often talk about when describing their journey through breast cancer. One of the assumptions that is often made in website usability testing is that users who behave a certain way one day are likely to behave the same way on another day. This assumption is a safe one for most websites. But at Breastcancer.org, we’ve learned that our users can develop very narrowly focused website goals immediately after 1) a new breast cancer diagnosis, 2) a change in prognosis, or 3) at the beginning of an invasive treatment regimen like surgery or chemotherapy. During these events, a user’s behavior can be very different from how they would behave normally.

To get accurate observations, we must find users that have been recently diagnosed and/or are in treatment. Needless to say, coming in to the usability lab and sitting in front of a website for 2 hours is not necessarily a priority for these folks.

To further complicate the picture, some women may be feeling anxiety or fear—which has a huge impact on cognitive function. There may also be sudden-onset menopause as a result of treatment. There is often fatigue from surgery or chemotherapy. There can be other side effects from pain or treatment drugs. Pile on top of this the potential for sleep trouble and depression…

The bottom line for usability researchers is that using a website to find information about a breast cancer diagnosis is just not the same thing as buying a CD at Amazon.com!

The true impact of job and financial stress hit home for me a few years back during a user testing session. We were doing a “card sort,” which is a technique for developing and validating the site’s navigational hierarchy and page titles (also called information architecture). The participant was a woman who had been diagnosed a few months back and was currently undergoing chemo.

We had a stack of index cards on which were written 60 or 70 webpage titles. We were hoping to determine an intuitive set of top-level navigation “buckets” to house these pages (the website’s current top-level navigation “buckets” are “Symptoms & Diagnosis,” “Treatment & Side Effects,” etc.).

The user testing participant had been asked to make piles of notecards—each pile was meant to be a group of web page titles that seemed related to each other.

The test participant had made a pile that pretty well matched what would become the “Treatment & Side Effects” section. She then had a second pile that included cards like “Paying for your Care,” “Breast Cancer and Your Job,” and “Managing Your Medical Records.”

As she placed the last card on that second pile she stopped to assess her work… and then burst into tears. As I scrambled to find a box of tissues, she began apologizing for “ruining the research.” After she had recovered somewhat, I gently asked her what it was that had caused her reaction.

“You’d think I should be most concerned about this stuff,” she said, putting her finger on the “Treatment & Side Effects” pile. Pointing to the second pile full of insurance and financial topics, she said, “But it’s actually this stuff that keeps me up at night.”

Far from “ruining the research,” this was one of the most important lessons I had learned from user testing. It led to several new sections of content on these topics and forced the whole team to realize that users may be coming to the website with a much more complex mix of goals and emotions than we had realized.

With tens of thousands of web pages and dozens of different software systems all interacting together, it is a constant chore to make sure things are as easy to use as possible. We’re so grateful to our test participants for lending their time and feedback. With their help, we’ve been able to make improvements to the Breastcancer.org website that benefit millions of people each year.


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