Designing & Performing Our Generative Research

Week 10 | March 19–25, 2024

This week we prepared for our workshop at UPMC. We were fortunate to have the hospital care team and patients and their caregivers as participants: gaining multiple perspectives would only strengthen our final intervention.

Our Initial Ideas

As we explored ways to answer our research question:

How can our design help gynonc patients navigate the informational and emotional overload of their recent diagnosis by connecting them to meaningful resources and communities of care so that they can self-advocate for the help and care they feel is important?

we gravitated toward two initial generative exercises:

1. a way for participants to prioritize different topics
2. a visual exploration that gets deeper into participant experience and perhaps their deeper priorities, as well

First Exercise

For our first exercise, we wanted to write topics from the cancer binder, our interviews, and our exploratory research on Jenga blocks. We were going to play a game of Jenga, having participants talk through the topics and prioritize them as we play.

This Jenga exercise was meant to give us harder data. We would be able to see topics that hospital care teams and caregivers both prioritize. This information could help us to frame and structure our content in a way that is meaningful to patients, caregivers, and the care team.

An added bonus? We knew who was a patient, a caregiver, and a care team member. We could see where the similarities and differences lie between the two groupings, if any.

Second Exercise

The second exercise takes areas of the body and uses them as a metaphor. For example, in the eye area you could prompt a participant with “Legs: what are you running from/toward?”

We would have figures for the patient and for the care team. They would be large, and as a community patients fill out their sheet next to the care team, and vice versa. This way each could see what they have in common or they might see things from the others’ perspective.

This second exercise would give us softer, more qualitative data. Though just because it’s more difficult to assign numbers and statistics, these insights are incredibly valuable because they can naturally bring up things that are difficult to express in other ways.

Final Generative Exercises

As we tested and reviewed our designs (both Tuesday and Thursday), we realized we had a lot of room for improvement!

Making It Much More Manageable | First Exercise Revisited

On Tuesday, we realized this exercise needed the most attention to be more useful for us. We realized that Jenga might not be the most useful framework for getting the information we needed. Through testing and talking with Grace, Kristin, and Aman, we realized that Jenga was inappropriate because it was more useful for shared conversation.

The Jenga game is most useful when both the participant and the person running the exercise contribute. It’s much more awkward when it’s one-sided.

So, from this we decided to shift to a card sort. On Thursday we tested this. It went much better, and we used the same set of topics we identified over the weekend.

We tested by laying them out in front of people and having them pick those that are of greatest priority to them within 48 hours of diagnosis.

As you might imagine, that was universally overwhelming. Stacie Rohrbach suggested going through three cards at a time, removing one that is least important to them. This made reviewing 54 cards much more manageable!

We went through the entire deck three times, leaving only 16 cards for them to prioritize.

In addition to that change, we also color-coded the cards, based on what we thought were four overall themes:

• Care
  your communities of CARE (patient)
  your patients’ communities of CARE (care team)
  self care, note taking, care team, journal, caregiver, family, relaxation, pets, support systems, faith, friends, social support, body image, wellness, luck, hope
• Ask
  you ASK about these (patient)
  you want your patients to ASK about these (care team)
  symptoms, daily life, diagnosis, infections, googling/self research, oral care, weight, financial assistance, home care instructions, hair loss, clinical trials
• Know
  you want to KNOW more about (patient)
  patients want to KNOW more about (care team)
  social worker, mortality, early detection, genetics, medical bias, life after cancer, prevention, sexual health, nutrition, physical activity, personal priorities, counseling, palliative care
• Need
  you NEED to do (patient)
  your patients NEED to do (care team)
  test results, side effects, medications, chemotherapy, boundaries, advanced directive options, appointments, pain management, time off, insurance

Once down to about 16 cards, we would have them map the cards to four quadrants: CARE, ASK, KNOW, NEED. Then, we would have participants sort them in terms of overall priority. Finally, we would ask if any of the cards gained importance outside of that initial 24–48 hour timeframe.

Making It Personal | Second Exercise Revisited

This also needed a little more refinement. However, this was a much simpler lift.

We had a figure that looked like a gingerbread person. However, since we were dealing with female cancers, we changed it to the silhouette of a woman.

Additionally, we refined the prompts so that they were more appropriate. We initially had the same prompts for patients as we did the care team, which didn’t quite work as we had intended. However, with a little workshopping, we were happy with how they turned out.

Care Team Prompts

• Brain | What do you wish you had more time to tell patients who just received a diagnosis?
• Ears | What questions do you wish your patients would ask you?
• Hands | When treating patients, what do you hold onto? What do you have to let go?
• Arms | When things are difficult, what do you find comfort in?
• Heart | What do you feel is morst important when caring for patients?
• Spine | Who supports you throughout the day?
• Legs | When providing care, what carries you through? What holds you back?

Patient Prompts

• Brain | Knowing what you do now, what do you wish you could tell yourself when you first received your diagnosis?
• Mouth | What questions did you have, but felt you couldn’t ask your care team?
• Hands | What do you hold onto? What did you let go?
• Arms | When things are difficult, what do you find comfort in?
• Heart | Who do you rely on most?
• Spine | Who supports you through this journey?
• Gut | How do you digest your biggest concerns?
• Legs | What carries you through each day? What holds you back?

For both groups, we encouraged them to contribute extra areas as they wanted.

How It Went

Kristin coordinated the event with UPMC, and it was beautifully planned. Aman was there to support us, as well. We ran our exercises along with the other three groups.

It felt incredible to be in a room with people who were both generous with their time and supportive of our work.

We regrouped immediately after with our initial insights, but plan to go deeper into those next week.

The work for this project comes from the Designing for CARE course, designed by Kristin Hughes for the School of Design, Carnegie Mellon University. This course is a collaboration between the School of Design and University of Pittsburgh Medical Center.