Both in the consumer and clinical worlds, it’s important not only to design for the user and involve them in the process, but also to realize the full scope of your user base, and make sure no one gets left behind.

Considering the user is a vital step in teasing out the human element of connected health, and a number of speakers at this month’s Connected Health Conference will be tackling that issue, including Senior Director of Connected Health Innovation at Partners HealthCare Kamal Jethwani, and Tufts University School of Medicine Associate Professor and Recycle Health founder Lisa Gualtieri.

“This isn’t designed for me”

“Who are our personas? Who are our patients? What are their lives like?” Jethwani said to MobiHealthNews. “What happens in their life that we need to fit in with — versus designing a system that they have to modify their entire life to be able to use. That’s something that in the early stages is really important to understand because if you don’t consider that, you’re not going to develop something that works for them.”

This is easy to say, but can be hard to implement when even the simplest UI aspects could have unconsidered implications for particular subsets of patients. Gualtieri gave a particularly striking example.

“One of the apps that we were using, you had to put in your date of birth and it was dials — so the default is 2018 and then you start spinning it,” she said. “And it was a few people who were spinning this to get to — you know these were older adults and as they were spinning it, they were like ‘I really have to spin this a long time’. And you know, they were kind of joking, but I thought, why make somebody feel bad? Why make someone feel old? It’s not increasing their excitement about using this. It’s making them think it’s not really designed for them.”

In testing out an automated text message system for people with diabetes, Jethwani also got a reminder to challenge his assumptions about patients, although in this case smart technology was able to correct for the oversight.

“We saw someone was getting messages at three in the morning and we thought ‘This poor person is getting messages in the middle of the night’ So we called to make sure we weren’t completely off base,” Jethwani said. “One of the first things he told us was he loved the program because it sent him messages right as he was getting out of work. And the machine learning algorithm figured it out on its own through trial and error. And nowhere in the medical record did we have any data about him being a night shift worker or any of that. We were giving him insulin and treatment on a regular schedule.”

This need to consider all kinds of patients extends to the consumer world as well. As the founder of Recycle Health, a nonprofit that collects used fitness trackers, refurbishes them, and provides them to people in need, Gualtieri’s focus is often on those kinds of connected activity trackers. She said when Recycle Health provides trackers to older people, they often express that they had previously avoided the devices because they thought they weren’t for them.

“If you look at how Fitbit advertises, it’s very much kind of the young healthy people,” Gualtieri said. “I’ve only seen one Fitbit ad that had someone with grey hair, and it was this guy whose daughter gave him the Fitbit because she was engaged and she wanted him to look good and fit into his suit for her wedding. And while I totally get that as a marketing ploy, it really bothered me because it’s not about feeling good, it’s not about prevention of chronic disease. It’s about one day."

Other barriers to access

Of course, in addition to feeling excluded by design or marketing choices, there are many other barriers that keep people from using, appreciating or benefitting from digital health tools. Cost is a major one, and Recycle Health was founded in an effort to start to address the fact that there were populations that could benefit from health tech but didn’t have access to it. Recycle Health has used its supply of donated trackers to help a wide variety of groups including homeless populations, low-income schoolchildren and older adults. For example, Gualtieri described one project with a homeless shelter in New Jersey.

“These people’s primary concern in life is that they don’t have a home, they don’t have a job. So what they’re trying to do is help people to turn their lives around. And while they’re in residence there they’re also trying to teach them about nutrition, fitness etc. For a lot of people what they found was that it’s not that they didn’t care, it’s just that they cared about a lot of other things more,” she said. “With the trackers, what they were able to do was [make the experience] fun instead of one more thing that you have to learn to take better care of yourself.”

Designers also need to consider what kind of technology — up to and including smartphones — their patients, users or members might not have access to or the digital literacy to use.

“One thing we didn’t really expect but were surprised by is the extent to which people have smartphones but don’t really know how to use them, have pay-as-you-go phones or early version phones that they really can’t download apps to, or people who have a phone but they’ve never downloaded an app themselves,” Gualtieri said, discussing some research she has been involved with on digital literacy in older adults. “And that becomes a huge barrier, not just for using a tracker and the associated fitness app, but also for the wealth of digital health innovations that are taking place.”

Finally, designers need to understand not just who their users are, but where they are in their life, which can change their motivation — and their need for intervention — drastically.

“if you’re pregnant and there’s a limited amount of time to change your behaviors because that’s going to affect your baby, we find that those patients are very motivated to do something, they’re very ready to change, and in a lot of those cases our programs work really well and we don’t have to work hard for engagement,” Jethwani said. “Versus patients who have had diabetes for 15 or 20 years, and they’ve lived with it, and they don’t face symptoms on a day-to-day basis have lower motivation to change. In that case we try more things like gamification and other motivational patterns so you can get them to a point where they’re taking care of these sorts of things.”

Gualtieri said that many physicians don’t realize how major of a life change retirement is for older adults, and how it can affect motivation to work out or take care of oneself.

“A lot of people have this really dramatic change in their lifestyle and one of the things that we’re really interested in is how can trackers help with that and also how can data reflect these changes so that their physician can work with them,” she said.

The Connected Health Conference starts Oct. 17 at the Seaport World Trade Center in Boston.

Jethwani will be presenting on two sessions: “From Hype to Reality: How to Make AI Work for You” on Thursday the 18th at 10:40 a.m. and “What it Really Takes to Build a Connected Health Solution: Separating Myth from Reality” at 12:40 p.m. Oct. 19.

Gualtieri will be moderating the session “Designing for Equity” at 1:40 p.m. Oct. 19.