When Dr. Joyce Lee, a pediatric endocrinologist and associate professor of pediatrics at the University of Michigan Medical School, talks about the origins of a patient-centered participatory design initiative in the Ann Arbor community, it begins with her son. She temporarily relocated her family to California as part of a sabbatical, and developed a series of videos with her son so that his teachers would know how to spot signs of a severe allergic reaction and how to treat him in those situations. That inspired her to start a community of designers, physicians, engineers, healthcare workers, patients and caregivers to develop ways to collaborate on projects to make it easier for young people to communicate their healthcare needs and feel more in control of their health.
Lee developed HealthDesignByUs with Matt Kenyon and John Marshall — associate professors from Michigan’s School of Art and Design to give caregivers and patients the support they need to be more in control of their care. The list of projects it has created shows the imaginative approaches it’s developed. For example, Lee created a primer for designers to understand the fundamental needs of Type 1 and Type 2 diabetes patients.
An adolescent in the group with Type 1 diabetes came up with the idea of using a set of icons as a visual way to communicate more creatively about her disease and a collaboration partner worked with the group to develop these “diabeticons.” A University of Michigan student designed a diabetic superhero comic book. Although much of its work has centered on young people it has also included adult patients in workshops such as creating apps and other tools that would be helpful for other diabetics. It also co-sponsored a maker festival as part of the national day of making over the summer. Another young person created the digital prototype for an app as part of a workshop with the pediatric diabetes clinic at Mott Children’s Hospital.
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With so many people diagnosed with diabetes, it is critical to develop ways to make people feel comfortable managing their condition so they’re not overwhelmed by it. Healthcare professionals constantly remind us that failing to manage their condition leads to needless complications that result in huge hospitalization costs. Part of the challenge is listening to patients to get a better sense of their needs. By enabling patients to be problem solvers alongside clinicians, nurses and care managers, it can make a big difference.
“We blame the patient in healthcare when things go wrong, when in fact tools are often not enabling the patient to do what they need to do,” Lee said in a phone interview. “If you can work with patients to fix the design, it can help eliminate problems.”
It recently worked with Ann Arbor, Michigan-based gaming education company, Gamestart. It conducted the first of a two-part pilot workshop to help junior high schoolers with Type 1 diabetes better understand and manage their condition by tapping their interest in gaming software programming.
Gamestart founders Nate Aschenbach and David Arditti met Lee at TedX Detroit earlier this year. In a phone interview, they explained that the idea is to reduce the fear factor of managing a disease with life threatening complications. The avatar that workshop participants design in the class using Gamestart’s template helps them communicate aspects of their condition, such as monitoring glucose levels, diet and insulin injections and the consequences when they ignore those tasks. It’s part of the wider goal to reduce their self-consciousness of their condition among peers.
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It provided a link to their students’ work from the pilot workshop and plans to hold another in the new year. The healthcare-oriented workshop is a first for the company, but it fits in to its approach. It offers classes for children from age 5 to 18 that teach use game design skills such as animation, programming and 3D modeling to excite interest in math, science and art. It also developed a workshop for young people at a juvenile detention center. They talked about their teaching approach at TedX Detroit.
Lee said HealthDesignByUs hopes to secure some funding to advance the prototypes the design initiative is developing. It’s an exciting time for the group, but Lee emphasizes that it is just one part of a national movement in its early stages.
“We just want a general embrace of this notion that patients and caregivers and healthcare [professionals] should be collaborating to create solution.
We are trying to seed the idea and the movement but it is something that has to happen culturally,” she said. “In healthcare we are not used to this whole culture of making. Our partners have the technology skills that help us go farther with expertise and talent.”