3 posts tagged “design”

Illustrating member perspectives on life with chronic illness

Posted November 17th, 2017 by

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge.

When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community.

Battling cluelessness and confusion

Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.”

Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He remodeled a bathroom, built a stone patio, removed an above-ground swimming pool and more. “I was just trying to figure out how not to take my anger out on others. That’s when I realized that PD may win the war, but I can fight the battles and do that to the best of my ability every day.”

How does Tommy describe life with Parkinson’s disease? Take a look…

Tommy has been a PatientsLikeMe member since 2007, and has been connecting with others like him for ten years. “I found a community of wonderful caring people. We were like a small rural community even though we were spread out across the world… This is an isolating disease that makes some people embarrassed about how their body moves, and reclusive, so I make sure to welcome new members.”

Knocking down barriers

Larry Tilson is a PatientsLikeMe member living with ALS. He shared his story with us by typing with his eyes using Eye Gaze technology. “My first sensation of not being able to move came in the winter of 2007, when I started having trouble buttoning a shirt and tying my shoes. It felt like something was restricting my movement.”

Gradually, Larry says the feeling progressed from his hands to his lower arms, then to his back and core muscles. “It feels like I am pushing through an ever-thickening invisible substance.”

Larry is in a different place now than the initial disbelief he felt when he was diagnosed. When he began to research he discovered other people living with ALS were living productive lives. “That’s when I decided to accept the fact that I have ALS and fight to stay productive. I don’t lie down. I try each day to find a way to enrich someone else’s life in some way.”

Take a look at how Larry describes life with his condition…

What’s Larry’s focus these days? “I try to knock down a barrier, help to change a rule, right a wrong, or contribute to science in some way like sharing my information on PatientsLikeMe. That is what makes me smile. To touch someone else’s life in a positive way, whether they know it or not.”

Interested in seeing the rest of this illustration series? Join the PatientsLikeMe community and view the rest of the images in the forum.

Share this post on Twitter and help spread the word.

More than a pretty face

Posted October 7th, 2013 by

You’ll soon see some changes to the way PatientsLikeMe looks, including new icons, colors and fonts. This might look like we’re just redecorating, but these changes are fundamental to helping us make the bigger improvements you’ve been asking for. We’re still putting a bit of polish on it, but here’s an overview of what’s changing, and why.

What you’ve told us

To improve your experience on the site, our design team started by interviewing members from many of our communities. We asked about their health experiences in general, then we watched people use PatientsLikeMe. We saw where they got stuck or frustrated and listened closely to what they value most. There were a handful of things we heard repeatedly:

  • There’s a lot of great information, but it could be less cluttered and easier to navigate. Dealing with your health is overwhelming enough as it is.
  • The experience on tablets and phones could be better.
  • Most people are happy to share health data to support research, but it’s not always clear what’s most important to share and why. Entering some kinds of data can also be challenging.
  • Sharing experiences with other members is the best part of the site, so it should be even easier to find and connect with other people who have similar experiences and interests.

What’s changing

Nearly all of the changes you’ll see in the next month are cosmetic, but there are a few places where we’ve changed minor things to be more consistent across the site. The only navigation change you’ll see is in the forums. Because many of you use only one forum, we’ve condensed the left navigation menu into a single list at the top of the page. This leaves more room to read posts, especially for people who need to use larger fonts.

Site style

As for the visual changes, you’ll see that we’ve introduced a white header and a soft blue background texture. This mirrors the shift you may have noticed in our emails and our homepage, making the site more bright and airy.

We’ll now be using fewer colors and icons, so there’s less competing for your attention. The remaining icons are toned down. Soon, the less important links on each page will be getting a more subtle treatment, too. Later this year and early next year, we’ll be simplifying the bright, busy badges and using more consistent colors in the charts to draw your attention or communicate whether something is positive, negative, or neutral.


Site style 2

The page headers, buttons, and fonts are getting an upgrade, too. We’re slowly working through each page to make layouts as consistent as possible, so you’ll always know where to look when you want to take an action or see the next page of results.  We’ve also chosen a beautiful new typeface called Avenir Next, which has wide, simple letters that make it a pleasure to read on the screen.

What’s coming later this year and next year

We started with visual design because it will make many of the other upgrades easier. The updated controls are built to be touchscreen-friendly for mobile phones and tablets. Some of the rebuilt pages already resize themselves for smaller screens, and we’ll be upgrading the rest a page at a time. We also have an engineer focused on making our charts work on Apple iOS devices.

You might notice a few odds and ends that feel unfinished, like the badges and charts that clearly don’t match the new look. Unfortunately, trying to upgrade too many things at once tends to cause bugs. Updating a big site is like rewiring an airplane while it’s flying. We hope you can bear with us while we clean up the rough edges as quickly as possible.

Over the next few months, you’ll start seeing big enhancements to our news feeds and journals. First, we’ll make them easier to read and more relevant. After that, we’ll start adding richer content. We’ve noticed our members are making more and more use of these pages, so we think they’ll eventually become the place most people check out first.

We’ll also be making it much easier to share the data that’s most valuable for research (and explaining why it’s important). The three stars page will allow direct data entry and will stop asking for old data. Updating your treatments will get easier, too.

This is just a preview of what’s coming in the near future. We’ve heard all the feedback you’ve been sharing in the forums and in conversations with us, and we have more upgrades planned for next year.

Our members do amazing things together: raising awareness, sharing your experiences to support medical research, and helping each other live better every day. I think our planned improvements will make all of that easier over the next year or so. In the meantime, I hope these first steps will at least make it a little more beautiful.

PatientsLikeMe member KimGoodwin