Bear Genes

UX Research and Design for the Rare Disease Institute

Dr. Natasha Shur (CN Hopsital, RDI)
Dr. Marshall Summar (CN Hopsital, RDI)
Allison Putnam

How could Bear Genes be redesigned to communicate complex medical information clearly, effectively and delightfully?

Getting Started

I spoke to the stakeholders Dr. Summar and Dr. Shur to learn about how Bear Genes was being used by patients and genetic counselors. How did it improve diagnosis for families? How did it clarify dense medical jargon? What pain points are still being observed?

Then I took a look at the app itself and performed a heuristic analysis on key aspects of the existing design. Navigation through the app overall did not behave as expected, but the content itself was carefully considered.

One major problem was medical language that would not be accessible to the average person.

User Research

I was put in contact with users through the Rare Disease Institute and interviewed them using best practices to gather information about how they used the app, what their wholistic experience as a parent of a patient with a rare disease diagnosis has been and where are areas of improvement. I gathered all these insights from each interviewee and organized them into an affinity map to pull out larger themes.

Key Insights

• Visual elements help communicate complex medical ideas

• Technical language can be a barrier to communication

• Community helps with emotional support after a diagnosis

Looking Forward

I took the insights learned above and began by analyzing how they could be addressed at a structural level.

Card Sorting And IA

I asked users to participate in card sorting. From the result, I designed a simplified Information Architecture that would bring all non-video content under the ‘Menu’.

‘Before your Genetic Visit’ video category would contain all introductory videos, useful before a first visit, a critical moment in the diagnostic journey.

In order to address the problems with Navigation, I redesigned the user path beginning with the Home Screen. When a user opened Bear Genes the menu button would navigate in an expected way.

Prototyping And User Testing

I performed a design studio and mapped out a series of paper screens to execute the design insights I learned from user research. I used Invision to create a clickable prototype of these screens. I then took this prototype to user to test how the changes might be received.

Based on user testing, I learned that the medical language was still a huge barrier to use. I would need to find a better solution to presenting this information.

Feedback from genetic counselors pointed to the original design that included shapes and colors as a distinguishing feature to video categories. Many patients in the RDI are children with disabilities within the autism spectrum, as well as color blindness and other visual/cognitive impairments. For the next iteration, I brought back some of the color and symbol elements from the original design.

I created several iterations of this redesign each increasing in fidelity, testing with users at every stage.

Final Design Notes

Using insight gathered from user interviews and product testing, I refined the final design to prioritize clarity in navigation and providing a wide range of accessibility, including color blindness.