Why empathy matters: one unforgettable year in Healthcare UX

When tragedy accidentally gave me insight into my users

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Photo by Dominik Lange on Unsplash

Empathy for design purposes seems like it’s the next (dying) buzzword.

It’s impossible, according to Don Norman.

It’s a talking point with no action behind it.

Perhaps as a result of overuse, when most designers talk about empathy, they don’t seem to be referring to fact-gathering, but something more like feeling-broadcasting

But I think it’s still useful. Empathy was key in making me, a UX designer who thought they knew everything, into a better designer.

The textbook definition of empathy according to IDEO’s Human-centred Design toolkit is that:

Empathy is a “deep understanding of the problems and realities of the people you are designing for”.

At it’s best, it is a deep understanding for a user base that may be misunderstood, such as Patricia Moore’s study into the elderly.

At it’s worst? Well, it’s a buzzword.

But I had a great non-design mentor, who taught me what empathy actually meant within the domain of healthcare. I eventually took her message to heart, and it’s been instrumental in developing as a designer.

But it took a tragedy for me to see it.

To show how this happened, I’ll take my mentor’s other piece of advice and start at the beginning.

My family works in the ugly side of healthcare, the kind where people don’t come back. I’ve caught glimpses of devastation from cancer diagnoses when my parents had to work. I’ve seen more than enough pained smiles of nice people going in for treatment and never leaving.

As a child, I was fascinated and horrified by it all. I knew that I’d never be comfortable enough with it to be a doctor, but I wanted to improve the experiences of patients somehow.

When I was older, I searched for a way to improve healthcare from a different angle, and when I found UX I was ecstatic.

I got a graduate degree in Human-Centered Computing, focusing on incorporating technology and UX into surgical settings, and when I was accepted into a usability fellowship with a federal cancer organization, I was thrilled.

But I soon learned that it’s a different experience from what we normally perceive as UX.

First of all, I recommend that you read Chris Kiess’s post on Healthcare (you might as well read his entire catalog, he’s one of my idols). While I can’t speak for the entire industry, I can speak about some of the differences that I encountered.

To give a little bit of background, large healthcare organizations such as hospitals or federal organizations often use software through a 3rd party vendor.

Therefore, many of the design changes you might want to make to the software will fall on deaf ears as it’s beyond your control.

In addition, federal organizations may have contractors that work on front-end stuff such as coding or design.

As a result, I was classified as a Usability fellow for the program. I actually worked as a UX designer on internal projects (and know the difference between the two!) but Usability is probably a better descriptor for my role. After all, the goals of usability (efficiency, effectiveness, and satisfaction) were what resonated with my audience more than UX.

I was brought in to help re-design a number of tools and resources for a wider user base: specifically, for cancer patients who may be seeking information after a diagnosis.

It would be my job to report on the problem: what was failing based on usability goals, giving recommendations based on design principles, and creating designs and documentation for contractors to work with.

I felt like it was a strange way to structure things, but I didn’t mind that much when I started.

I had a chance to wear multiple roles, but I wasn’t happy starting out. The problem with a lot of my efforts, was that I didn’t feel validated as a designer.

Healthcare, as a whole, is about a decade behind in terms of technology trends from other fields (Go read Chris Kiess already). As a result, a chunk of my time was spent justifying my existence and my degree. Most of my colleagues were a jumble of acronyms you’d expect from this organizations: MD, PhD, PharmD, MPH. Here I was, with an MS in a field that no one knew about.

As a result, I got a lot of “interestings” and assumptions about what I did. No, I wasn’t a copywriter. I wasn’t a graphic designer. I wasn’t a communications manager. I was a Usability fellow (and also UX designer), one of the only ones in the building.

It didn’t help that one of my duties was helping a consulting firm do exactly what I expected from this position. They came in, had stakeholder interviews, did user research, usability testing, data analysis, presented findings and recommended design changes with appropriate design prototypes. I wasn’t allowed to do that.

Sometimes, I received two-week internal projects that I could implement like that, but the bulk of my work was without access to users.

As a result, I found myself getting a little standoffish (and coincidentally failing at the 1st step being an empathic observer: Abandon Your Ego).

I had gotten a graduate degree in this stuff, focusing on healthcare. I had research projects and papers, I worked with doctors and other medical personnel, why weren’t they letting me do the interesting work?

In retrospect, it was obvious. I didn’t understand the organization.

This organization was built entirely around cancer data. People in medical universities sometimes conducted groundbreaking research with this data.

As a result, this was an organization whose main concern was making sure that any cancer data they collected was valid but also anonymized through multiple layers of security. A data breach might mean discovering who millions of cancer patients were, what their expected prognosis was, and where they lived.

Doing ‘user testing’ of cancer patients literally ran against everything this organization stood for.

But I didn’t get it at the time. I thought things moved slow because it was a large organization. I thought they didn’t understand UX, so they shut down everything I tried to do.

I thought they were dismissive of me when I knew a whole lot about healthcare. Turns out, I didn’t know enough about one user group.

In all my experience designing for healthcare, I was designing for doctors. This was the first opportunity I had designing for patients.

Designing for the patient is hardly the same thing. (Side note: The reason why I keep advocating for Chris Kiess is because he’s the entire reason I write on Medium)

So I fought with my mentor over the intricacies of formalities. My designs were tabled and forgotten time and time again. None of my research proposals were approved. Speaking to other people, especially those senior to me, was a tricky affair.

I was a UX designer focused on healthcare, and I was failing at it. If it were not for a tragedy, I might have stayed that way.

I don’t want to dwell on the details too much. But someone I considered a mentor committed suicide. He was hiding the fact that he been diagnosed with a neurodegenerative condition, and as it got worse, he killed himself. The ugly side of healthcare, where people don’t recover, struck again.

There were a lot of quiet days afterwards, and I was given a lot of space to think about it at work. I was surprised that I was processing it so well, but perhaps I had grown used to it as a child.

But one of the things that stuck with me was this: Why?

While I don’t know how long this had persisted, he was still coming to work. Still doing those boring things like meetings and presentations.

I couldn’t understand what he was going through, even as I got to hear the note he left behind.

But then I had a thought. It was a question that my ego hadn’t allowed me to see.

“What’s it like, for patients who are diagnosed with something likely fatal?”

It was a simple question, but one that I hadn’t asked. I had researched the tools I was supposed to design, the patient’s habits, how they look for information online, and what designs would work well with the branding of the organization.

But I hadn’t empathized enough with them to consider one simple fact: Getting cancer sucks.

I hadn’t begun to learn about what the process was like getting that likely fatal diagnosis.

Did you know that the risk of suicide more than quadruples after a cancer diagnosis?

I didn’t until I looked into it.

Why did this matter? Because the user’s workflow had a couple of extra steps that I hadn’t seen until now.

My workflow up until now started with a cancer patient somehow ending up on the tool. I had written down some basic task-based motivations (like trying to find this piece of information), but they all came here somehow.

Let me walk you through the steps that I was missing.

  1. A patient is given a cancer diagnosis by a doctor.

2. They’re often given resources to help them work through emotions or other information. However, they may still have questions.

3. According to the HINTS survey, more patients now are starting to search for more information online than going straight to their healthcare provider.

4. Given that I was working for an organization that wanted to serve as a trusted source of information about cancer, they might end up on the homepage and click around.

There’s a paradox where patients simultaneously seek to find out as much information as possible, but also don’t want to know too much otherwise they get overwhelmed.

5. They find the tool that I am re-designing.

And I might present to them what might be an equally grim diagnosis through this tool.

How would you feel if a design inappropriately broadcast that you have a 1% chance to live 5 years?

Suddenly, the refusals of my designs started to make sense. My users might be emotionally vulnerable, having been recently diagnosed with cancer, and my design was going to represent an organization that was a trusted source.

How would you feel if a design inappropriately broadcast that you have a 1% chance to live 5 years? I hadn’t asked that question, because I wasn’t empathizing with the users.

When I considered this, my concerns changed.

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Here is an example of something I thought was a key problem that needed addressing. A UX consultant had recommended emphasizing one of several different sections as users were having trouble finding ways to complete tasks. The contractor had then emphasized all of them, leading to issues on where the user was supposed to actually start.

If there’s no clear start, it impacts how long it takes a user to complete tasks. If we were primarily concerned with efficiency and time on task, this might be the first thing we want to address.

But when I looked into our expanded audience, I realized that some cancer patients might not care about efficiency. Based on what I learned, it’s an equally valid use case that they might be slowly browsing, trying to cope emotionally while finding information without a clear start or end.

In that case, the concern is rather making sure that they’re able to complete tasks, regardless of how long it takes.

Of course, I might be exaggerating. Maybe these patients wouldn’t even look for anything I re-designed until they had gone through the entire emotional roller coaster.

But they could be. As a result, I had a responsibility to make sure that they could find what they needed but also didn’t overwhelm them.

If you’re creating personas, where do you talk about motivation? Maybe you have a few bullet points or a paragraph if you’re lucky. It might be suitable for your users. But it might not be.

I’m not asking you to go on an emotional roller coaster to try and understand your user. All I’m asking is, when you’re designing something for a user, ask one question:

How is their day going?

  • If you’re designing something for young mothers, was their kid sick all day, and so they’re covered in sweat from running around, and all they want to do is watch a show? Think about how extra frustrating poor UX must be.
  • If you’re designing an step counting/fitness app to be used for older adults and rehabilitation, are they struggling to start an exercise habit after decades of inactivity? Think about how not properly counting steps and feeling shame at low step counts will cause them to quickly abandon your technology.
  • If you’re designing something to be used by parents of children on the Autism Spectrum, is this a good day? Or is this a day where they simply won’t want to interact with anything?

I’m pretty sure that I’ll never forget about empathy in design thinking ever again.

And, in my recent job search, that’s been a source of frustration.

When the fellowship ended, I kind of took the path of least resistance and drifted away from healthcare. I needed to get some distance after everything that happened. But I’ve missed it, and I’ve been searching for other opportunities within Healthcare UX.

That’s one reason why I wrote this entire piece. Searching for Healthcare UX jobs, it’s frustrating that the job descriptions don’t talk at all about empathy.

I get it. Empathy was a little bit of a buzzword in design, and now it may be on it’s way out. But that doesn’t mean that it’s not important. As designers, we have responsibility to our users to design something with them in mind.

I recently saw a healthcare UX job ad recently whose only requirement was for Dribbble-level portfolios of stunning design. I sighed a little when I saw it, seeing that the pendulum was swinging back against empathy.

Hopefully, it’s something that doesn’t deal with the ugly side of healthcare.

Written by

Healthcare-focused UX designer and researcher. Creator of two online courses on design communication and UX research planning: https://tinyurl.com/y5m2j42v

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