Listening to End Users is Key When Developing Digital Health Products

As technology pushes forward, innovators are often tempted to bring all the bells and whistles to their digital health product. But some are stopping to look at the human element in digital health before launching a new product.

“Human design for us … is essential. We spend a huge amount of time watching how people with varying degrees of challenge interact with our app,” Jim Cavan, CEO of BackPack Health, a digital health startup that lets people manage and share their health information, told MobiHealthNews. “If people don’t use tech because of a physical limitation, then regardless of how good the app is it doesn’t make any sense.”

Examining the human element in digital health design has increasingly become a hot topic in the space. Next week at the Connected Health Conference (CHC) in Boston, Cavan and others will take part in roundtables and keynotes discussions on how best to include the human element in digital design.

The human element in practice

Recently, Cavan teamed up with the Marfan Foundation to create a new patient portal for people living with Marfan syndrome. This quickly became an exercise in what it means to include the human element in digital health, he said, as they soon discovered that the design required a conversation with the end user.

“We really had patients involved from the very outset, either doctors that worked with patients day in and day out or patients,” Michael Weamer, president and CEO of the Marfan Foundation, who will also be speaking at CHC, told MobiHealthNews.

When developing the app, physicians specializing in the condition were included in the advisory board. In addition, two people living with Marfan syndrome came to the meetings. Patients were also involved in testing out different iterations of the portal and giving feedback.

Through this process the organizations quickly discovered that sometimes problems that seemed easy to fix were actually the most important to patients.

“We had planned on doing an emergency share card, which we have a very novel solution for and is critically important and has already saved a life here and there, so that is wonderful,” Cavan said. “But the first and loudest request we had from patients was to be able to display food allergies in many languages [on the platform], so we created an emergency food allergy card. So the quick and easy fix made a lot of people happy.”

Researchers were also able to hear patients talk about common inconveniences that they faced in getting care and start coming up with digital health fixes.

“A lot of patients who have very complex health conditions don’t want to have to enter all of their information because they could potentially have so much information, going back a lifetime in some cases,” Cavan said. “So we spent a lot of time and effort finding a technology partner’s solution that would allow us to digitally capture that information, and that is something we will be announcing with the Marfan Foundation later this fall. We are very excited about the ability for us to step out there and pre-populate a patient’s health record and make it easier for them to have their health information in one place, and take advantage of all the other offerings that BackPack health can provide to a patient.”

Focus changes depending on user

The human element doesn’t just mean involving patients in the process but whoever is going to be using the app in the end — and in healthcare that could take on a lot of different meanings.

“For any innovation project, it is important to be focused on the actual users. For digital health solutions for patients, you want to understand the patients’ experience,” Naomi Fried, founder and CEO of Health Innovation Strategies and former chief innovation officer at Boston Children’s Hospital who will also be presenting at CHC, told MobiHealthNews.“For digital health solutions for providers, it is very important to understand the provider workflow and what their experience is. And often times provider want to know: will this solution save time and help me be more efficient?”

The Marfan Foundation and BackPack Health partnership expanded beyond just a patient portal to also included a research component to help doctors and researchers learn more about the condition.

“From my perspective it was all about the patients. If on my end it was just the patient portal that would have been an extraordinary achievement,” Weamer said. “With that said, we were careful to work with the research community and physician community and make them first in terms of research protocol. There was this multi-strategy approach. It was patient first on the patient portal, and physician and scientist first when it came [time] to make sure when we did collect the data it would be used for research purposes.”

At CHC Fried plans on talking about including caregivers in the design process. But when including this audience, it is also important not to lump all caregivers into one group, she said. Each set of caregivers face individual challenges.

“For caregivers, you want to start by understanding what challenges they face. And those challenges would be different depending on who the caregiver is caring for — a parent providing care for a child. or an adult child providing care to an aging parent,” Fried said. “These caregivers can have very different sets of needs. Take some time to understand what their experience is and what challenges they are facing.”

Simone Orlowski, research scientist in human centered design at Partners Connected who will also be presenting at CHC, recommends getting the lay of the land and then moving forward with a project.

“What we always recommend is going to the end users. Then we will start is understanding the current setting — what is currently happening and what they are doing, what is working well and what isn’t,” Orlowski told MobiHealthNews. “And in healthcare, unlike in consumer products, you tend to more often than not have multiple end users, whether that is the physician, patients or all of these.”

Once you understand different users’ perspectives, then developers can create a better product.

“What we need to do is understand what is their current state and what needs to change,” Orlowski said. “Then when we think about engagement and we are thinking about creating new solutions, how do we then solve for these issues in a way that recognizes what their motivation are what they want to achieve as the end result?”