How Patient Experience Design Creates a Better Website For Your Nonprofit

Why did you get into your line of work in the first place?

For most of you reading this, it’s because of the patient. Some of you have a friend or family member with a particular health condition your organization specializes in. Others began with no personal connection but quickly developed deep understanding and empathy for the people you serve.

Despite the observation that most nonprofit professionals are in it for the people, there is an equally opposite observation: the healthcare system is not always in it for the patient.

One of the most powerful examples of this is Doug Dietz’s TEDx talk, Transforming healthcare for children and their families. It’s well worth the 20 minute watch.

Doug is a principal designer for GE Healthcare who is responsible for designing diagnostic imaging equipment. His talk tells a gutwrenching story of how he discovered that children were so terrified of lying alone inside a huge, noisy MRI machine that 80% of them had to be sedated. He went on to put together a team that redesigned an entire experience that over 99% of children could complete without needing sedation.

Doug’s story is a vivid example of how the messy, emotional reality of the patient experience often comes face-to-face with a cold, clinical healthcare system every day.

As a nonprofit health organization, let me assert that the primary job of your digital presence is to help bridge that gap.

When a person is sitting alone in their physician’s office after just receiving a diagnosis—heart pounding, hands shaking, eyes stinging with tears, frantically Googling—and your organization’s site pops up for the first time, does their narrative change because of you?

That’s what Patient Experience Design (PXD) is all about.

Maybe the work of your nonprofit health organization doesn’t align with a traditional journey of diagnosis or treatment. Maybe you use a different word than “patient” to describe the people you help. The fact remains that it’s your job to change the story of the people you serve so they get a better outcome than going through their journey without you.

So how does this work, exactly?

PXD is the practice of User Experience with a focus on the patient

Traditional user experience design (UX) focuses on the quality of a user’s interaction with your website, with an emphasis on making it useful, useable, accessible, delightful, etc.

The problem is that applying general UX practices to a health-focused digital environment does not automatically guarantee it will be effective.

Health nonprofits have a lot of information to present to patients. Even if this information is well-organized and findable, it still doesn’t make it less overwhelming.

Remember, you live in your issue space 40+ hours each week and have a finely-tuned mental map of how everything fits together. Even if your website is a perfect embodiment of that map, most of you are missing the “you are here” sticker for your patients.

PXD takes UX practices and applies them to the patient experience to nurture them from whatever stage they’re currently on and guide them to the next step based on where you know they need to go next, rather than leaving them to grope their way through.

PXD begins with empathy

Doug’s story begins with him developing a product based on the wrong assumptions about the patients using it. He assumed they would be concerned about whether the results would yield an accurate diagnosis, whether insurance would cover the cost, and if their boss would get mad that they had to take time off work again.

In reality, the #1 concern of parents was, “how am I going to get my child through this?”

It wasn’t that Doug didn’t take the people using his product into account. By all measures, as an expert in his space, he was most qualified to understand the people using his machines. He just made the wrong assumptions.

I find this same trend alive and well in nonprofit health organizations today. What may start as a raw connection to the patient slowly gets replaced with the curse of knowledge and a normalization of the realities of their condition.

I’m not saying you suddenly care less about the people you serve. If anything, I’m sure you care more after working with them for a long time.

However, your deep involvement in your organization makes it more difficult to put yourself in the shoes of a patient—or worse, causes you to make false assumptions about what they care about. And even if you have an ace in the hole—you are a patient—you are at the most risk of extrapolating your “experience of one” to all other patients.

In short, repeated exposure to an issue dulls the sharp edges of empathy.

I’m not here to label you as heartless, judge your organization, or discredit your experience and expertise. Far from it. I’m here to call out your hidden biases so you can see and work around them to create a better digital experience for the people you serve.

PXD ends with changing the narrative

If PXD starts with cultivating empathy for the patient, it ends with influencing their narrative.

When the next visitor arrives at your site, there is no way for you to instantly fix them or change their experience with the healthcare system (although I’m sure you’re working on that). The only thing you can change is their experience on the journey.

• Maybe that phone call with their family won’t be tear-free, but there will be a thread of hope.

• Maybe six months in, it won’t be easy, but they will experience small victories as they adjust to their new normal.

• And maybe a few years out, after they’ve recovered or learned how to live with their condition, they’ll want to help others through their journey in the same way you helped them.

Developing a good patient experience doesn’t ignore the need for fundraising, awareness, engagement, or advocacy. Rather, it precedes them.

• If you changed someone’s story, they are more likely to give money (and you are more likely to collect compelling impact metrics that help you raise money from others).

• If your article helped them experience a real victory, they are more likely to share it and subscribe or follow.

• If your organization walked with them through their journey, they are more likely to volunteer to help others.

• If you helped familiarize them with their health issue, they will have the mental capacity to hear and take action on the systemic problems around it that need to be addressed.

PXD helps you orchestrate this process so you can change the lives of patients and in turn achieve the outcomes that matter to your organization.

As Doug so profoundly said, “when you design for meaning, good things happen.”

​