Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)

Posted February 7th, 2018 by

Have you noticed changes on PatientsLikeMe in the past year? (We’re guessing you’ve spotted quite a few.) Did you know that we involve members in testing out various features or updates to the site before rolling them out? We do!

Member Barbara’s user research session with Kris Engdahl, principal user researcher (left), and Nicole Barron, UX designer (right)

On any given Thursday at PatientsLikeMe, there’s a good chance that Kris Engdahl is leading “user research” (aka “design research” or “usability testing”) sessions with members. Kris is our principal user researcher, and she works with PatiensLikeMe user experience (“UX”) designers and product managers to get member feedback on our website and product design.

In 2017, more than 70 members participated in testing the PatientsLikeMe website, mobile apps and aspects of the member experience. Sessions usually take place over speakerphone, sometimes with screen-sharing so that Kris and a small group of PatientsLikeMe designers and/or product managers can watch a member “test drive” a particular web page or feature that’s in development.

“When members volunteer to participate in a [usability] study, they are helping us find problems in a design before we unleash it on the world,” Kris says. “They perform a real service for the PatientsLikeMe community.”

On a recent Thursday with eight (30-minute) testing sessions on the docket, two members let us sit in for a look at how the sessions go.

First up: Bill

Bill (bill_stearns) is living with major depressive disorder (MDD) and multiple autoimmune conditions.

“Everything you say is right,” Kris says, kicking off the session. “Don’t hold back.”

Bill notes up front that he’s worked in the IT field for a while (as a systems software developer), so he’s not the average user.

“Usability testing has been my life,” he says. “I learned a long time ago that what was usable for a geek like me might not pass a laymen’s test.”

He looks over the web page (a prototype of the one that’s being designed), and Kris asks him to walk through how he’d use the page. Is it clear overall? Do the sections and buttons make sense? Is anything in the way? The prototype is sort of a “kitchen sink” model with a lot of different boxes or sections on the page, so Kris asks Bill which three boxes he finds most useful. His feedback (and other testers’) is compiled so that our UX designers can spot trends and understand member perspectives.

We followed up with Bill to ask him why he wanted to take part in user testing. “I think PatientsLikeMe is a great application of modern information technologies and has the potential to benefit everybody,” he says. “Whatever I can offer PLM, whether my personal medical data or my other expertise, makes me a part of something bigger than myself, and that gives me satisfaction that I make a difference.”

Next up: Barbara

Barbara (Beau10), pictured above, is living with relapsing-remitting multiple sclerosis (MS). She has never worked in the IT field or participated in usability testing. She’s a former K-12 special education teacher.

“Walk me through what you see — what you’d use,” Kris says, as Barbara takes her first look at the prototype webpage.

“One thing I’ve noticed is that, if I look at all of this [the page as a whole], I get overwhelmed,” Barbara says. “I like that, by grouping things like this [with different boxes with subheads in the prototype], I don’t get cognitively overwhelmed. When that happens, I click off a page.”

Because some health conditions — including neurological disorders like MS — can cause cognitive or visual symptoms, perspectives like Barbara’s are very important.

We followed up with Barbara and asked her what she’d like to happen with her feedback. “My hope for my input in the usability testing is that the organization of the page will be simple and easy for people to navigate on their own without help from others,” she says.

More about Kris: PatientsLikeMe’s user research expert

Kris has a master’s degree in Human Factors in Informational Design and has been working in the user research field for decades, starting back in the days where tests were always conducted through a one-way mirror. She has conducted usability research for everything from business intelligence tools to medical devices, including at-home kidney dialysis machines and insulin pumps.

At PatientsLikeMe, Kris is leading design research on a website with 600,000 members with 2,700 different health conditions.

“Understanding our members is key to our ability to make the site work as well as it possibly can for members,” Kris says. “The better we understand how members approach the site, and the more we see how well our designs work (or not) for our members, the better we can design in a way that supports member goals. Without our members’ input, we would very likely guess wrong about what they need.”

Member feedback matters

We’re always interested in hearing feedback from our members, and the Community Team is listening. The moderators notice when members provide feedback in the forums and let the other teams here at PatientsLikeMe know what you’re saying about your experience on the site. Community Moderator Sarah Lembke works with Kris and the Product Team to find members with a variety of health conditions to participate in user research. Depending on the particular usability study, we may be seeking newer members or longtime members, or people with Androids vs. iPhones, or a mix!

If you’re a member of PatientsLikeMe and are interested in participating in usability testing, drop us an email at interviews@patientslikeme.com.

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Light therapy for depression: What is it, and how does it work?

Posted January 31st, 2018 by

Bright light therapy is a treatment that’s become increasingly common for treating seasonal affective disorder, a condition that impacts many during the winter months. We sat down with our in-house research specialist to discuss light therapy – what it is, how it works and if it can help treat other types of depression in addition to seasonal affective disorder.

What is light therapy?

Light therapy, sometimes called blue light therapy or light box therapy, involves sitting or working, for a prescribed amount of time, near a device that gives off light that mimics daylight. It’s thought to ease symptoms of depression by impacting brain chemicals linked to mood and sleep.

Light therapy effectiveness: What the research says

While additional studies are needed to fully understand the role of light therapy, so far results from clinical trials investigating the effectiveness of this treatment on people with major depressive disorder (MDD) have been generally positive.

  • One study, involving 50 inpatients with severe MDD, found that when researchers combined the antidepressant venlafaxine with light therapy, recipients experienced “significantly lower HDRS depression scores” than those only taking the antidepressant. The HDRS (Hamilton Depression Rating Scale) is a questionnaire that helps provide an indication of depression severity.
  • Another 8-week trial involving 122 participants living with non-seasonal MDD found that light therapy, both on its own and in combination with the SSRI fluoxetine, was effective and well tolerated in those who participated.
  • Another study found mixed results, highlighting the need for more research to fully understand the role of light therapy

It’s important to note that while these studies showed positive efficacy, researchers still don’t know what “dose” or duration of light therapy is best and for what variations of depression.

Results: What you can expect

Light therapy is unlikely to cure major depression, but it may ease symptoms, especially those related to the season, and might help you feel better. Here’s what some PatientsLikeMe members have said about using light therapy as a treatment:

Check out side effects, dosages and costs members have reported for this treatment.

Choosing a light box

Although you don’t need a prescription to buy a light therapy box, it’s best to ask your doctor or medical health provider if light therapy is a good option for you. Before beginning treatment, you should discuss whether you need to take any special precautions, and what type of light therapy box would best meet your needs so you get the most benefit and minimize side effects. You should also discuss how to introduce light therapy into your treatment regimen. Also, know that health insurance companies rarely cover the cost of this treatment.

According to the Mayo Clinic, a light box should:

  • Provide an exposure to 10,000 lux of light
  • Emit as little UV light as possible

Recommendations for using the light box typically include:

  • Use the light box within the first hour of waking up in the morning
  • 20-30 minutes is generally the recommended amount of time
  • Use at a distance of about 16-24 inches from the face
  • Eyes should be open, but not looking directly at the light

Things to consider:

  • Is it made specifically to treat seasonal affective disorder? Some lights are designed to treat skin disorders, make sure you’re selecting the right one for your needs!
  • How much UV light does it release? UV light can damage your eyes if used incorrectly. Light boxes used to treat SAD should filter out most or all UV light.
  • Is it the style you need? Light boxes come in all shapes and sizes – the effectiveness of light therapy depends on daily use so choose a product that’s convenient for you.

Light boxes are designed to be safe and effective, but they’re not approved or regulated by the FDA so speak with your healthcare provider to understand your options. Read more about things to consider before choosing a product here. Do you use a light box? Share your experience and advice in the comments for choosing a product.

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