Introductions and Initial Thoughts

Week 01 & 02 | January 16–29

Throughout the course of the semester, we will be exploring ways to improve care for gynecological oncology. Gynecological oncology (gynonc) is the study of cancers that happen in female bodies.

For the past two weeks, we have met with educators and professionals within the gynonc specialty, learning more about the patients, cancers, treatments, process. Though healthcare is part of a wicked problem, we will be focusing on small changes through design that are meaningful for those who are most closely affected: those with gynecological cancer, their caregivers, and their healthcare providers.

Kristin and the UPMC gynonc CARE team have workshopped and created topics they found to be important in improving gynonc care:

1. Unexpected places and spaces where relevant health information connects to patients and caregivers on their own time.
2. How do we identify resources patients need?
3. How do we appropriately screen patients to identify their needs and ensure that the screenings are actionable for both providers and patients?
4. Learning You Have Cancer: What to Expect
5. Creating supportive environments where staff can thrive?

We spent individual time reviewing the topics, then as a class had an UNCONFERENCE where we sorted ourselves into groups of 3–4 around our topics of interest.

Our Topic | Learning You Have Cancer: What to Expect

How might we reimagine the “chemo binder” into a conversational guide that clearly explains the chemotherapy process, aids patients and caregivers in crafting relevant questions for their cancer care team, and empowers them with the knowledge to inquire about diverse resources, research trials, and their specific and evolving needs?

Our Team

Alexis Morrell | Hello! I’m Alexis, both a student and a staff member at Carnegie Mellon University. I study Master of Design in Designing for Interactions with the School of Design currently. I’ve had quite an arc in educational experience, starting with a BA in Biology (pre-med), changing professions with a MA in Professional & Technical Writing, and finally honing in on what I love with my MA in Design and MDes in Designing for Interactions. I am passionate about education and creating environments in which people have the potential space to grow — and thrive!

Thien Le | Hi! I am Thien, a designer (of products, brands, and experiences) studying Design with an additional major in Social and Political History, and minoring in Human-Computer Interaction at Carnegie Mellon University. I’m really interested in learning about how to design touchpoints of care that are rooted in deep systemic issues and understanding the people that are affected by those systems.

Qiyu Hu | I’m Qiyu, a graduate student in the Human-Computer Interaction Program. As a UX researcher and designer, I am enthusiastic about identifying and solving meaningful problems through evidence-based design. Delving into the intricacies of healthcare, I aim to gain insights by shadowing and engaging with doctors and patients, striving to create impactful designs driven by thoughtful findings.

Initial Thoughts

As we learn more about gynonc, we find ourselves curious and asking questions:

• How might we reinforce healthy relationships between patients and healthcare workers? Patients don’t have a lot of time with healthcare providers. Physical needs and treatments are priorities in their care and often take up entire appointments. How might we help patients guide conversations toward their needs — and feel confident that they are talking to the right person in their care team?
• These cancers are inherently tied to sexual health. Yet, the sexual aspect of a patient’s life is significantly downplayed. The PRIcist (taken at home through mychart) is the only screener to address it and asks only one question, and that question may contain some stigma around a positive response. Only 2% of new and 0% of chemo patients received any kind of documented discussion or referral for this. Yet, according to Amanda McDonald, from data collected it is well-known that gynonc patients have high sexual health needs. (WISH clinic and at home treatments are resources; “unmet needs” survey to come!)
• How might we make the “cancer binder” more of an interactive experience — a resource for them? Currently, the cancer binder is a well-intentioned, yet seemingly ineffectual and forgotten resource. Is there a way that we can think about helping patients guide conversations, keep notes, and received more tailored content so what they learn from their appointments doesn’t get lost in the shuffle between appointments?

Quotes

AM

“There are so many opportunities we have to make better care.”

“Mental health is an undertreated, but an important aspect of patient health.”

Regarding the unmet needs survey: “Having information directly from patients is really, really valuable.”

GC

“We know the right things to do — we just can’t do them.”

“The most common thing we hear our patients say is, ‘I didn’t know they had that!’”

“I think a lot about what kind of anticipatory guidance we should be looking for.”

“Because the physicians are so dedicated, they’re constantly trying to fit in more patients.”

“These clinicians are so caring. It’s so hard to move on when you have to say, ‘I’m sorry: your cancer is still progressing.”

“People in this industry have to be good at building walls. It’s hard to break them down when it’s time.”

“I would love to see a help chain so that a person could say ‘I am concerned about you because I can sense that things are tough for you.’ I want to normalize the idea of people asking for help.

HD

“People in the clinics are amazing, and they’re pushed to capacity.”

“How can we help to raise people up and celebrate what they do?”

“It’s hard to ask people who are time stressed to do one more thing at work.”

“A lot of times frustrations in a clinic could be that we are frustrated because of what someone did(n’t) do. Rather, it’s a systems problem. We are looking for systems to change in meaningful ways.”

“Think about the small, meaningful, impactful changes that can be made.”

KH

“Missed opportunities for hope and joy.”

“How do we build a network of care for the carers?”

“There’s such beauty in the smallness.”

“How many people fall through the cracks?”

ST

“How can we ensure people are getting what they need when they need it? We are here to take care of people—not just their disease.”

“We want our patients to do more than just live—we want them to thrive.”

“We need to meet people where they are in that moment of time, and we need to recognize that will change.”

“We don’t have a good system to get people what they need, when they need it, and how to get them there.”

Uncredited

“I don’t know of a dedicated meditation space for staff. Space is somewhat limited.”

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.