Patient Access

Inclusive Design in Healthcare Means Developing Empathy and Understanding

Inclusive design in the real world

Digital healthcare solutions have grown at a rapid pace within the past few years, but with this has come the knowledge that one size does not fit all when it comes to technology.

Incorporating user-centered and inclusive design into health technology means making them accessible to as many people as possible—because things that are convenient for some, such as online appointments, hands-free options, or digital waiting rooms, are a necessity for others.

With this in mind, inclusive designers are now finding ways to help patients access the care they need by using an empathetic approach and also involving users earlier in the process.

Designing with Empathy

Viraj Patwardhan, vice president of digital design and consumer experience at Thomas Jefferson University Hospitals and a HIMSS collaborator, shared that professional designers are now taught to design with empathy in mind.

“And empathy doesn't mean that you have to sympathize with someone, empathy is like thinking about that person, and what are some of the day-to-day things [they] may go through, and how do you accommodate them,” Patwardhan said.

And that comes from asking the right kind of questions.

“How are we going to make sure that we include the people who are actually going to use this product during the design process, rather at the end and saying that, okay, here's what we have now, you know, you respond,” Patwardhan said.

Developers are finding it helpful to include patients in the design phase of the tool or app they are testing so they can point out any barriers to accessing it.

Patwardhan used an example of older adults not being able to download an app because they didn’t have their app store passwords, and having their adult children help.

“So first fundamental flaw is that we never thought that this [would be a barrier]. So I think including your audience right at the beginning of the design is important,” Patwardhan said.

Engaging the Community

Brook McCall, director, Tech Access Initiative with the United Spinal Association and a HIMSS collaborator shared her unique perspective to the topic of inclusive design in healthcare. 

“I think it's really hard to recreate lived experience. It's kind of impossible. So, if a product is addressing a certain population more than another, you need to make sure just initially that there's buy-in and need,” McCall said.

She noted it is important to get to know the community you are looking to support and make sure that something you’re going to design is something that is both wanted and needed.

“You don't want to build something that is potentially game changing seemingly, but then, unfortunately, goes the other way and becomes... you know, [is] just being left on the shelf, gets dusty,” McCall said. “You put all your time and energy into something thinking it's going to be so revolutionary, and then, unfortunately, it's not utilized by the population and that's wasteful. I mean, there's so much work to be done in addressing specific needs that you don't want to be creating things that are unnecessary.”

She added that gaining the trust of those the project will benefit goes a long way.

“It empowers the community to help you build the best product possible. You also gain a lot of respect and admiration from us, and you're building something that is likely going to benefit the most people,” McCall said.

Listening Versus Understanding

One thing that helps establish that trust is to include diversity in your design team. We can learn from diversity to recognize other viewpoints and needs. 

“Diversity brings a lot of different perspectives. So in general, for a good design, the more diverse your team is, the better it's going to be,” Patwardhan said.

He reiterated that there has been a shift in the past few years to also engage users during the design process. But not just to hear their perspective, but to understand it.

“There's a difference. Like, ‘Yeah, I've heard everything you said,’ versus understanding and then trying to replicate that in your design and making sure that, okay, I've taken care of this. That's the key to this,” Patwardhan said.

According to McCall, many of those who have disabilities and have the lived experience, want to be heard and make changes.

“We have this unique wisdom and it feels really wasteful to not be able to share those in a way that's really effective,” McCall said.

Nonprofits and patient groups are a great resource for those who want to provide inclusive design in healthcare, she noted.

“We are vital lines looking to be thought leaders in these design spaces. And that's on all levels of tech and connected health and everything that is so quickly evolving in our lives... it's at the tip of our fingers to make these just revolutionary changes in our lives and our access,” McCall said.

Planning for Failure

McCall noted that many devices designed for accessibility are just seen as conveniences for others, such as hands-free technology.

“It's relatable for anyone to have their hands full. You may be in the car and driving, you may have had a friend that just had twins. You may have your hands full with so many different things that some of these technologies that have been seen traditionally as ‘accessibility features’ are, you know, they're not. They're conveniences and they are something that guarantees a more streamlined and useful product overall,” McCall said.

But with that line of thinking comes a problem—what happens when they fail? When they are used as a convenience people can just go without, but those who need these devices also require a backup or way to access them if they fail.

“That's a big part, just telling people about these features and making sure they know them. But make sure that that's something that I can easily repair or there's an alternate solution. I think sometimes that kind of thing is overlooked when we aren't involved from the beginning for somebody who's like, ‘Oh, I can just press the reset button and it's fine,’” McCall said.

Reliability is a huge factor when it comes to inclusive design, which is why it’s important to tackle potential failures early to not only work out the kinks, but find a way that your potential users can respond when it happens.

“Don't try and build something perfect. Try and make sure that something works, and you have thought about making sure that if it fails, you're going to address it,” Patwardhan said.

And owning up to those failures is key to maintaining trust with your users.

“From a software perspective, if you fail, just be honest about it and say, ‘Look, this just failed. We are extremely sorry, we are working to make it better,’” Patwardhan said. “I'm okay when someone admits that, ‘We tried our best, but guess what? Our software failed. Sorry, but we are going to make sure that we are going to fix it.’”

By teaching empathy, involving users early in the process, and learning to understand their needs, healthcare leaders can continue to work towards inclusive design in their organizations.

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