Patient-Centered Participatory Design

By Dr. Joyce LeePatient-centeredParticipatory Design: The Future of Healthcare

I stumbled into design by accident.

It started when I was a caregiver of kids with life-threatening food allergies.

In the fall of 2012, our family moved out to the West coast for a sabbatical year at Stanford University and we brought our kids, 6 year old B and 3 year old S with us. Because both our kids suffer from severe life-threatening food allergies to dairy, egg, and peanuts, we had to teach the caregivers at school and daycare how and when to use the Epi-Pen (the medication given by needle that could save their lives in an emergency). However, the system we encountered was not well-equipped for managing their medical condition.

I needed to provide the caregivers with the health information in a more engaging and informative way, so we decided to make a Youtube video. And by we I mean the collective “we” since I am a #lazytigermom. My son was 6 at the time and had just learned to read and write; I engaged him in the creation of the video so that he could learn more about his own disease and how to protect himself, as well as provide his teachers with critical information that could save his life. I scripted and directed the video; and B provided all of the text, illustrations, and narration. Together as a team, we transformed the typical allergy action plan that that looked like this…


…into this prototype of effective participatory design.

You may ask, how do I know it was effective? Because we use it. 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.

From this experience, I learned about what I see as the future of healthcare: patient-centered participatory design.

What is participatory design? 

Wikipedia defines it as “an approach to design attempting to actively involve all stakeholders (e.g. employees, partners, customers, citizens, end users) in the design process to help ensure the result meets their needs and is usable”. Participatory design has traditionally meant that participants are working with a formal research design team to “to cooperate with designers, researchers and developers during an innovation process”, but from the vantage point of healthcare, it is happening in more patient-driven, less formal, and more networked ways.

One great example of patient-centered participatory design happening at scale in the type 1 diabetes community that I work in as a pediatrician and diabetes specialist is the Nightscout Project. You can read more about it in a recent article published by the Wall Street Journal. It’s a DIY mobile technology system that was created by John Costik, the a dad of a boy with type 1 diabetes who wanted to be able to see his son’s real-time glucose readings (from an FDA approved continuous glucose monitoring system) on his mobile phone and watch. He created computer code that allowed him to capture and view the data remotely and then shared this code with other patients and caregivers of children with diabetes. A core group of patients/caregivers made the code open source and available online, and opened a private Facebook group that has increased to 12000 members in a year’s time. There is now a global network of individuals who are using the Nightscout technology, and continue to iterate different parts of the system to improve and create new features for themselves and for a large community of patients and caregivers. (Check out this blogpost for more information)

This is meaningful and effective patient-driven participatory design for health: Patients and caregivers who are expert in living with a health condition, who understand what types of health problems need to be solved, and who creatively and collaboratively develop the solutions they need to solve those problems.

Based on my own personal experience and what I have witnessed through patient collaborations like Nightscout, I am passionate about the integration of patient-centered participatory design into healthcare, and I am fortunate to be working with a talented group of individuals (healthcare providers, patients/caregivers, artists, designers, librarians, curators, entrepreneurs, and gamers) to accomplish this, through a collaborative innovation network called

Throughout the past year, we have been prototyping different ways of integrating health and design. We have conducted design workshops that recognize patients/caregivers as experts and provides them the opportunity to be co-designers of solutions for health with interdisciplinary groups of individuals. We have paired patient advocates with design students as partners in design to create engaging educational materials and tools like comic books and diabetes emoticons inspired by the patient experience. Finally, we are creating a new model of diabetes education using participatory game design that allows kids to be active creators of a game that simulates principles of diabetes in a peer-to-peer environment for learning.

I’ve learned so much this year, and I wanted to share some takeaways about participatory design & health.

Advice for Healthcare stakeholders:

Bring patients to the table and treat them as your equal design partners

Patients and caregivers are the end-user in healthcare, yet they are the voice that is almost always left out of the room. If you do not work with patients as partners to identify the problems that need to be solved, you will be trying to solve the wrong problems (your problems and not theirs), and if you do not co-design with them, your solutions will likely fail to gain traction and adoption.

You don’t have to work at an IDEO or Frog to design. We are all designers.

As healthcare stakeholders, we design everyday. Don’t underestimate the privilege we have by being inside the living laboratory of healthcare. Every clinical visit is a design opportunity waiting to be realized! Who better to design than the patients/caregivers who live with a health condition 24-7 or the healthcare providers who have extensive knowledge of health conditions, treatments, and gaps in the delivery of care for their patients?

Don’t design alone.

I have had the great fortune of working with and learning from a variety of designers this year, including ethnographers, design researchers, visual designers, and systems designers. Design is truly a collaborative effort; the greater the diversity of expertise, knowledge, and skills, the more creative and effective your solutions will be, and even more importantly, the more fun it will be.

Advice for Designers:

Seek out healthcare partners (patients/caregivers and providers): Don’t build the next wellness app number 1,243,212 in the app store. There are a million problems to be solved in healthcare! Really, horrible, painful problems that have negative consequences for patient experience and real medical harm. You have the capacity to guide us and insist that user-centered design becomes our guiding philosophy.

Bring patients to the table. There has been some trepidation among collaborators in the planning of design workshops with regard to patient and caregiver participation. It’s some weird sort of perception that perhaps patients are too fragile or maybe they can’t handle it? When you talk to patients who have participated in some of our workshops, they find the experience to be therapeutic and empowering.

Finally, my advice to all, including myself:

Be humble!

Designers, problem solvers by nature, are additionally bounded by the “solutions mode” mentality. Always wanting to make things better has its altruistic qualities, but it can also come off as arrogant when a designer fails to respect the solutions that already exist, particularly those that have evolved from within a community.”

—Jan Chipchase, Hidden in Plain Sight: How to Create Extraordinary Products for Tomorrow’s Customers.

I am excited to be part of the Prescribe Design community! I would love to hear more about your thoughts, techniques and ideas about patient-centered participatory design.

Dr. Joyce LeeJoyce Lee MD, MPH, is a pediatrician, diabetes specialist, and researcher at the University of Michigan. You can find her on Twitter and at
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