I envisioned and advocated for this project when I was an instructional designer at the University of British Columbia’s division of Continuing Professional Development (UBC CPD) in 2018. The design team creates online courses for healthcare practioners (HCPs). HCPs take courses to stay up to date with medical guidelines, how to care for specific patient groups or to refresh on medical conditions.
However, I noticed a flaw in the process of creating medical education; patients are rarely involved. This lack of collaboration between patients, doctors and educators can unknowingly reinforce harmful marginalisation of patients by the medical community.
How might we involve patients in the process of creating and evaluating medical education?
How might we humanise medical education by collaborating with patients?
I delivered this project as a Instructional designer at the University of British Columbia's Division of Continuing Professional Development. In this project, I was an:
Based on my knowledge of the problem space, I advocated to take an inclusive design approach when designing the Gender-Affirming Primary Care course for primary care practitioners.
Strategic utilization of user research, interaction design, and service design opened up new ways of working and was a way to prototype policies for bringing patients into this process.
Outcomes of integrating patients into the medical education design process were:
Best practices for co-creating medical education with patients
Based on the interaction design prototypes and user research conducted, I created best practice guidelines and packaged it up into a publication to enable other teams to also integrate patient feedback into course development.
I piloted a co-creation workshop about the ethical representation of patients. The technique did not work well to create patient illustrations, but instead participant insights were used to create principles for patient representation and were published on Medium.
Making intentional choices to create images that represent patients
Reading time: 5 min read
Patient case studies are a common learning tool used in medical education. To scope the work, I first conducted interviews with learners about our patient case studies.
Early in the design process, I was looking at ways to integrate patient stories and to ethically represent patients visually; however, I realised that these two interventions alone did not change systemic problems with patient education. To further shift the power dynamics and give patients more agency in the process of creating medical education, I facilitated patient evaluations with patients on content and adapted it given their feedback.
A clickable prototype was created for testing that embedded a patient's story within the educational content. Patient stories were audio recorded so that the learner felt more connected to the story.
Chest binding (referred to as “binding”) is the practice of compressing the chest tissue (breasts) to create a flatter appearing chest.
People bind for a number of reasons. Binding can:
Some people bind as an interim measure until they can have surgery, while others may not desire or be able to access surgery.
Click on the play button below to hear someone’s story about their journey binding. We recommend listening and reading along. This experience was written by a non-binary person, but has been narrated by someone else.
Two years ago, I bought my first binder. I remember being on edge waiting for it to come in the mail.
For months before purchasing one, I was fixated on how uncomfortable I was with how masculine or feminine my body looked. It would make me feel weak, uncomfortable and gross at how I couldn’t control and change how my body looked. I focused on my chest (which give me the most dysphoria in specific situations) and was already aware of binding as an option to help mediate dysphoria.
When my binder came, I remember taking photos of myself out of the binder, and then in it, just to see just how ‘flat’ it made me look. But the first thing I noticed when looking at the photos was that I was smiling and I didn’t even notice that when I was taking it.”
I first created paper prototypes to explore ways to include patient stories
I then embedded these stories within the content and prototyped them using HTML/CSS.
Next, I printed these prototypes out to gather feedback. Often, people are a lot more honest when the fidelity of the prototype is lowered.
Throughout this project, I learnt a lot about how changing Ways of Working can be a cultural shift. It is more than changing processes, but changing the way people think about the work that they are doing. That’s why a large portion of my project was creating the Best Practice Guidelines, mentoring staff, and engaging with them throughout the process; however, it will also be up to the people at senior levels to also appreciate the difference and make it a strategic priority.
Through an Interaction Design and User Research process, I was able to impact the health sector. Given this work, and my pechakucha Health Talk at Quality Forum 2019 Talk, I won the Design for Service Award from Emily Carr University of Art + Design worth $2,000. It is an amazing honour to be selected for such a prestigious award.
This project also taught me about how to Design for Policy. By using the Gender-Affirming Care course as a case study, I was able to develop Best Practices that can be applied to any course, independent of subject matter. These Best Practices should evolve over time as more is learnt, but it is a starting point.
Since leaving UBC CPD to move to London, the course has gone live. More patient stories have been added and I am so pleased with how it turned out. I hope the learners enjoy it as well.
“The content provided a more detailed perspective than I was previously exposed to. I feel better prepared to provide gender-affirming care in a caring and sensitive manner.”
“This was a great reminder that every interaction with every person can be better if it is entered with an open mind. The course was great, many thanks”