Healthcare design by us (and you!)

Creating a culture of participatory design in healthcare

mott blog - healthdesignbyus imageHere’s a statement you don’t see too many blog posts start out with…

We don’t know what we’ve created, but we know we’re onto something big.

It’s called Healthdesignby.us, and it’s a community of individuals (patients, doctors, makers, artists, designers, researchers, professors, students, advocates) passionate about health, technology, and participatory design.

Curious? Concerned? Skeptical? Let me give you some background.

It all started with a YouTube video.

I know there are lots of readers thinking, “Seriously? A YouTube video?”

Yup. I made a YouTube video with my son back in the fall of 2012.

I am a pediatric endocrinologist – I had no intentions of becoming a designer, but fell into it by necessity. I had just moved the family cross-country for a sabbatical year, and was facing the dilemma of having two kids with severe food allergies enrolled in a school/daycare system that was not well-equipped for managing their medications and health condition. I was a parent with a health problem that needed to be solved.

Together as a team, my son and I transformed the allergy action plan that looked like this:

food allergy

into this:

Sadly, the top example is standard and average for the institution of healthcare – a complicated, unengaging document that does little to motivate the reader. This is what we design people call “bad design.”

And the resulting YouTube video that my son and I made turned out to be our first prototype of effective participatory design!

(For more details about how it all came together, check out my original post.)

How do I know it was effective?

We use it!

Successful design is defined by the user. My family hasn’t scaled this, made money off this, or distributed this as a consumer product. But it’s the tool we use every time we start a new school, meet a new teacher, or begin a new summer camp.

It has had positive effects on B’s confidence with managing his own condition and we are continually ideating more allergy prototypes.

And I am super proud of him as it went viral in it’s own modest way. (His video now has over 1000 hits, which in the eyes of a lazy tiger mom is just shy of Psy’s 2 billion for the Gangnam style!).

The most amazing thing is that he now thinks of himself now as a design thinker. That step of us making the video together was our first foray into participatory design. You don’t need to be a doctor. All you need to do is participate in your healthcare journey, and be a part of thinking about (designing) a better system that works for you.

Who can be a healthcare designer?

You can.

  • You don’t have to be trained as a “designer” to design. Design thinking is just a form of problem solving. That’s what patients and caregivers do everyday to manage their conditions. We are the experts who understand what the real problems are; therefore we should play a key role in creating the solutions that will keep us and our loved ones healthy.
  • Designing something yourself can be cheap and easy. You don’t need a contract with a major healthcare manufacturer to engage in healthcare design at a level that impacts your family.  And you don’t need $5000 or a production crew to make a video. We used paper, pencil, an app on my iPhone to scan the pictures, powerpoint, and a screencasting software. Who needs a medical education when you have google and cheap tools?

That’s all it took. What we did is no superhuman feat, but it inspired me to work with my colleagues to create the Healthdesignby.us movement.

Those of us involved so far have been actively involved in a broad range of activities to promote patient-centered design, the use of emerging technologies like mobile technology and social media, and the notion that we as a community (both local and virtual) should be part of the creation and promotion of health.

This effort is nothing without you, however – participatory design is only successful if it’s led by actual participants in healthcare!

Take the next step:

  • Join the conversation! You don’t have to have a formal prototype to have something worth talking about – it can be as simple as an idea or a question. Sometimes one idea leads to another when you put the power of a social community to work behind it! You can connect with our community via email, Facebook or Twitter.
  • Encourage your children and family members to participate in healthcare design. Check out this tool for designing an app.
  • Join us for our first event – the inaugural “We Make Health Fest” at the University of Michigan, Ann Arbor, on August 16th!

This blog post was modified for the Mott blog from it’s original publication – you can read the original post here. Dr. Lee also told the story of how the initial YouTube video that inspired healthdesignby.us came about at the 2013 Cusp Design Conference. You can check out the slides here.


Joyce Lee MDJoyce Lee, MD, MPH, is a pediatric endocrinologist, researcher, and design thinker. Healthdesignby.us is brought to you by Joyce Lee, Matt Kenyon and a local and virtual community.




Best Children's Hospitals - C.S. Mott Children's HospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.