Designing the Transition from Pediatric to Adult Specialty Healthcare

The journey toward adulthood for teens with chronic illnesses isn’t a sprint. But a design sprint was exactly what we needed to propel our work further.

Mapping out a program to support the teen transition of care journey.

A few months ago, Colleen (our design intern) and I began collaborating with nurses, doctors, and other clinical staff in our pediatric specialty clinic to discover ways to better support teenage patients and their families as they age out of pediatrics and enter adult specialty care. The goal of this work is to help adolescent young adults with chronic illnesses become independent in managing their own health conditions so that they can successfully navigate this very important life transition.

To understand the journey from the point of view of those involved, we conducted interviews and observations with over 60 participants which included patients, family members, providers and other clinical staff. We also invited our teenage patients to participate in hands-on, co-creative workshops where they created maps of their transition of care journeys and then brainstormed and created their own ideas for helping patients like them meet the challenges of transition.

Some of the important insights we gathered from our research were:

The range of learning styles and preferences among adolescent patients is diverse, but patients place a lot of trust in hands-on education from their providers. Patients also said that they wanted education and informational resources to be in different formats, with a native digital format optimized for access on a smartphone.

One of the most important skills that adolescent patients should build and practice in preparation for transitioning to adulthood is the ability to advocate for themselves.

There are important markers that help us know that adolescent patients are readying themselves for transition into adulthood. As they approach the age when they will move into adult specialty care, it’s important for adolescent patients to:

  • Be knowledgeable about their illness and treatment, and able to explain it to others.
  • Follow guidelines (meds, self-care, other treatments) to optimize their health and wellbeing.
  • Be confident in taking on increasing responsibility for their healthcare as they mature.

Patients who participated in the co-creative workshops all expressed how valuable these types of hands-on group activities were for making sense of the transition journey, particularly while working alongside others with different chronic conditions and at different stages in the journey.

Patients and their families loved the visual journey mapping timeline tool we created to help them see the entire transition journey, and they told us it revealed so many important things that they had never seen before.

With these and other insights in hand, we were ready to test some of our initial assumptions and early hunches regarding what kids with chronic illnesses need as they move through the transition of care journey. And, one of the best ways for us to move insights into action is to run a design sprint, or quick experiment. For us, a design sprint makes the most sense in the context of a larger project like this when we have already conducted in-depth research. The design sprint is partly a continuation of the research, partly a kick in the pants to begin designing and testing prototypes with our end users. It’s an awesome way to push ourselves and inject some terrific energy and fun into a project as well.

DAY 1 | Synthesis and Ideation

We invited our fellow designer Katie to join us, and then we kicked off the design sprint with a review of the major findings from our research and a discussion of the design opportunities they suggested. This round of analysis helped to ground us in what we’ve learned so far, as well as to address some initial constraints that could help us focus during the sprint. We also had several different types of materials on transition of care pinned up for reference because these are important existing resources that we felt needed to be accessible to our patients and families.

There are many existing resources about transition of care, but many of them are not designed with teens in mind.

Pulling out key ideas, we began to play around with mapping and drawing things out on the whiteboard. This discussion and visualization helped us realize pretty quickly that our initial prompt — an “interface” that helps patients and families access existing resources — was too limiting and actually not as important as we originally believed. So, we adjusted course and began to flesh out something more programmatic: a series of workshops with a digital tool for teens to help them meet specific goals along their journey that would help them prepare for entering the adult healthcare environment. We felt confident in this decision because 1) the teens who had participated in our workshops told us how helpful they were for understanding the transition of care journey, and 2) the teens we interviewed told us that their smartphones are an important way for them to communicate and access information. (The Pew Research Center’s Teens, Social Media & Technology Overview 2015 also lent support to what we heard: 92% of teens age 15–17 have access to a cell phone.)

We mapped out our discussion to better capture the most important aspects of what we’ve learned so far.

With this new direction more clearly defined and agreed upon, we sketched different ideas for the digital tool component of the program, which produced some interesting possibilities. We were most excited about experimenting with an idea for a SMS messaging application which would send periodic messages to teens during their transition years (typically age 14 to 18). As a platform, using basic text messaging made the most sense because it doesn’t require an app to download (and therefore require much front-end development), it’s portable across virtually every mobile phone, and it is one of the most dominant communication channels among our target users (teens).

We quickly brainstormed and sketched ideas for a digital tool.

The goal of the interactive text messages and the transition workshops is to help patients meet key milestones along their journey that will help them prepare for becoming more independent in managing their chronic conditions. The messages invite interaction by asking teens about different aspects of their healthcare, then responding with appropriate encouragement and advice (non-medical) and also directing them toward additional resources. The text message interactions would be scheduled according to what we know about the sequence of hard and soft skills acquisition that is important to successful transition.

DAY 2 | Designing and Refining the Prototype

On day two of the design sprint we began refining the idea for the text messaging prototype. We mapped out the sequence and content for several text message exchanges between the messaging application and teen patients. These exchanges cover a range of topics that address the hard and soft skills important to a successful transition, from understanding the specific aspects of your illness and your medical history to learning how to contact your doctor’s office.

We chose to flesh out messaging around two topics: 1) preparing for an upcoming appointment with a doctor, 2) and understanding and managing medications. In creating the content, we sketched out the series of interactions and logic — the messages the application sends and the allowable responses from users. It was difficult for us to adopt the mindset of teenagers so that we could create a believable “voice” of the sender (a bot, really), as well as present the content and questions in an engaging way. We had great insights about what the teens we interviewed said they wanted, but without their direct collaboration in writing the messages we were uncertain how well they would connect.

Paper prototypes of the text message interactions.

DAY 3 | Building the Prototype

We knew we could create a paper prototype of the interactive SMS messages to simulate the exchange and get useful feedback from teens. However, after some further research into available tools, we discovered that we could create a working digital prototype fairly quickly. To build the interactive SMS messaging application, I signed up for a trial account with TextIt, which has good documentation and a visual builder to create the flow and logic of the messaging interactions. TextIt directed me to a service called Nexmo where I created an SMS-enabled phone number (for free) that TextIt could use to send and receive text messages. Within minutes I had mocked up a quick flow and successfully tested it on my smartphone.

We used TexiIt to build a quick prototype of the SMS messaging application.

For the simplicity of testing the prototype with end users, I only built the messaging interaction around preparing for an upcoming appointment with a doctor. This exchange was less technical than the one about medications, and in this one we felt we had more accurately captured the voice of the teen. So, after some further refinement and quality assurance with the application, we were ready to test. (I learned through my testing of the application that the free version of Nexmo was not working with unregistered recipient phone numbers. The work around was to have our testers use my smartphone, which had the added benefit of not asking them to input their phone numbers into the system.)

We also needed to explain the overall program — the workshops and sequence of interactive text messages over a long period of time — to our test users, so Colleen quickly created a visual diagram to help set the stage with the teens for what we were proposing and testing with them.

We created this diagram to explain the overall program to our test users.

DAY 4 | Testing the Prototype

On the last day of the design sprint, we camped out at the Children’s Specialty Center (CSC) where all of the pediatric specialty clinics are located. We’ve been working very closely with doctors, nurses, and staff at the CSC over the last several months, and the relationships we’ve built with them have facilitated amazing access to patients. We checked in with one of the front desk staff, Genevieve, who reviewed the upcoming appointments for the day, and we identified a handful of patients matching our criteria: between the ages of 14 and 18 with a chronic health condition. As our potential test users arrived, Genevieve introduced us and we asked them if they had a few minutes to give us some feedback on our prototype.

Testing the messaging application prototype.
The text messaging application prototype.

The teens we tested with gave us really useful feedback, and the overwhelming response was very positive, confirming that we are on the right track. Some of the important things we heard were:

  • The goal of the messages was generally understood to be about supporting patients around an aspect of managing their health on their own. One teen said: “[The application will] help engage with my health instead of parents doing it for me.”
  • Text messaging was thought to be an accessible, immediate way to reach this age group.
  • The tone and language of the messages connected with our target users in a way that felt familiar, conversational, and natural. “It’s like something my friends would say.”
  • The link to other resources was appreciated and interesting (we linked to an article about visually documenting symptoms). One teen suggested that we include these links in a separate message at the end of the exchange so as to not interrupt the flow of the conversation.
  • Make the content relevant to the individual whenever possible. Present interesting stories, news on important medical breakthroughs, and other attention grabbers. When possible make the content specific to the patient’s chronic condition.
  • We need to easily provide users a way to opt out from receiving the text messages.

In the end, we felt that the design sprint was a success, and a pivotal moment in the life of the project. By kicking the design process into ideation, prototyping, and testing with end users, we were forced to make decisions about our future direction through the process of making something that we could show to people and get feedback on. While there is much more work to do to refine the design of the workshops and SMS messaging application, we validated that the basic concepts warrant further development and investment of our time. In sharing the story and outcomes of the sprint we hope to demonstrate what the possibilities are for a new set of tools to help adolescent young adults with chronic illnesses become independent in managing their own health conditions.

For another example of how we do design sprints, see Katie’s article “Sprinting to the Forest.”