Co-creating medical education with patients

Patient and doctor illustrations by eLearning desktop

Problem space

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.

Opportunities

How might we involve patients in the process of creating and evaluating medical education?

How might we humanise medical education by collaborating with patients?

My role

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:

Interaction designer
User researcher
Design for policy
Instructional designer – led course development and co-ordinated with stakeholders and design team

My approach

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:

Diverse patient stories have been embedded into the Gender-Affirming Primary Care course, available at https://elearning.ubccpd.ca/
Gender-Affirming Primary Care course was evaluated by trans and gender-diverse patients
Best practices guidelines of co-creating new medical design education that these methods can be applied to other courses

Policy outcome

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.

Download the document here

User research

Co-creation workshop

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.

6 Lessons Learned On Visual Representation of Patients

Making intentional choices to create images that represent patients

Reading time: 5 min read

Claudia moderating a co-creation session

Interviews with learners

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.

3 insights:

Case studies need intentional curation so that learners know what the takeaway is.
Providing information about what patients should look out for in a video is helpful.
Videos that show challenging patient interactions are favoured.

Before and after examples of content design

Question feedback needs to answer ‘why’ to reinforce the concepts.
Even if the learner got the question right, feedback is important.

The age diversity needs to match the population.
Age effects patient care the most compared to other areas of identity.

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Patient evaluations

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.

3 tips when conducting patient evaluations:

Dart board to symbolise the scope of focus

Move towards a focused area throughout the session.
Start with the course objectives, show all imagery or identifying factors of patients to gauge diversity, then move into the specific case study that the patient has lived experience with

Compensate patients as patient involvement has been traditionally seen as volunteer work.
By not compensating patients for their time, their lived experience and emotional labour is not being recognised.

Try to start with 2 patients per case study, and if there are issues, then recruit for more.
Ideally, given best practices of qualitative research, 5 patients per case study would be ideal, but this can be unfeasible.

Interaction design prototype

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.

Lesson 1: Binding

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WHAT IS BINDING?

Chest binding (referred to as “binding”) is the practice of compressing the chest tissue (breasts) to create a flatter appearing chest.

WHY DO PEOPLE USE BINDERS?

People bind for a number of reasons. Binding can:

be affirming and help ease gender dysphoria
increase self-esteem, confidence, and reduce anxiety
increase safety by influencing how the patient is perceived by others

Some people bind as an interim measure until they can have surgery, while others may not desire or be able to access surgery.

PATIENT PERSPECTIVE

THE POSITIVE IMPACTS OF BINDING

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.

Clickable prototype printed and with notes on it

Next, I printed these prototypes out to gather feedback. Often, people are a lot more honest when the fidelity of the prototype is lowered.

Lessons learned

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.

Impact

Based on this project, I was awarded the Health Design Award for Service that recognises work done to further the discipline of Health Design in Vancouver, BC
The course was launched in 2019 and has had 806 participants as of September 2020

Learner feedback from live course:

“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”