Focusing our Exploratory Research
Week 05 | February 13–19, 2024
This week, we were moving from the divergent phase of design research toward a more convergent one. By early next week, we are hoping to have identified our problem and design intervention statements. These will help us have a more focused approach before diverging again with generative research.
This post builds off of our Exploring the Physical Environments Surrounding Cancer Care post.
Forming Design Objectives
On Tuesday, we met in class to discuss all that we have been learning. We explored how that related to 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?
As we were reviewing some of our insights and how they connect with the topic, a few things really resonated with us and led to a great conversation with Kristin and Aman:
- since this is meant to be a conversational guide, it would be great to share multiple voices / perspectives
- in voicing multiple perspectives from a variety of people, it’s okay for us to show different views on the same topic without worrying about reconciling differences. This could lead to a richness of information that people can come back to and evolves with their changing needs over time
- we kept hearing things that point back to “information overload” and there being too much information to review in a short time in order to make a good, informed decision. Maybe listing resources isn’t the important thing here?
- whatever we decide, the conversational guide should not be prescriptive
Refining our Questions
After our initial exploration, we were able to form more specific questions about the gynonc care space:
- What do you, the patient, wish you knew?
- What did you find most helpful in navigating your chemo journey? Why?
- Was there something that you learned from the information you received in the chemo binder that you wish you had learned earlier?
- When did you feel that you had the most time to ask questions? Did you ever call the office or message them through the myUPMC app?
- What is the chemotherapy process? 15 min? myUPMC portal? chemo teaching?
- When are people asking questions?
Design Research Objectives
From our refined set of questions, we were able to form research objectives:
- Learn what people wish they knew and when they would have liked to learn it.
- Understand the chemo process, where certain resources might have the most impact, and how this process may be different under varying circumstances.
- Identify the best time for people to ask questions and when they currently ask them.
Determining Research Methods
On Tuesday, we began to discuss methods that are appropriate for each objective.
Understanding the chemo process might be the easiest to address. Interviews with healthcare professionals could answer this. Kristin mentioned one chemo nurse, Melissa, who might be helpful here. She also mentioned talking to Heidi and a PA, Krysta.
Understanding when people ask questions is next easiest. We could review Facebook groups and forums to see what people are asking at different stages of the process. We could also glean some information in interviews.
Most difficult and least straightforward, learning what people wish they knew and when is going to play a large role in our design. We could interview people and also design some cultural probes to help us address this.
On Wednesday, we met to review everything discussed and put a general time to what we still needed to learn.
On Thursday, Kristin mentioned three quick methods that would help us to learn more from patients:
- prioritizing different topics
- selecting words they feel are important
- MadLibs-style complete the blanks
Additional Resources and Research
Throughout the week, Kristin shared some resources with us that were helpful in understanding effective interventions within the healthcare landscape.
Gaby Brink | Innovating for the social impact economy
Gaby Brink talks about measuring impact in the social impact economy, knowing whether what you are doing is making a difference, and how to tell this story. Gaby Brink is the Founder and Chief Designer of Tomorrow & Tomorrow Labs and the Founder and CEO of Sparkwise.
Insights:
- funders drive a lot of innovation in the social impact economy, and engaging these funders is important in making progress
- in order to contribute meaningful change in this space, we need to put ourselves in positions where we are comfortable with the uncomfortable: we need to co-create with funders and multiple stakeholders throughout an organization
- identify pain points in the system that make it difficult to do what you need upfront so that by the time organizations are engaged in co-designing, they have one well-defined challenge
- during the generative phase: multidisciplinary teams co-create solutions, and it is assumed that everyone is a designer
- in the end they present a defined challenge, an articulated concept, a cost of implementation, and a roadmap forward so that stakeholders are well-versed in communicating these concepts back to their organizations and funders
- this act empowers people to continue thinking with an eye toward social impact
- impact dashboard, Sparkwise, helps to surface the myriad of information in which you might find change
- learn from your activities online and in person: data sets, cultural and global trends, long-term trends, case studies, storytelling and narrative (important!)
- data needs to be substantiated by stories and stories bring to life numbers
- starlings and murmurations: moving instantaneously together, a critical system
- “As change makers, we don’t need to design a better world, we need to design better feedback loops.” Owen Barter, a development economist. Gaby thinks we need to do both
America’s Health Literacy: Why We Need Accessible Healthcare
This PDF is a literature review of health literacy in the United States from the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services.
Insights:
- Even people with strong literacy skills may struggle with health literacy
- Only 12% of U.S. adults have proficient health literacy
- All adults, regardless of health literacy are more likely to get health information from radio / television, friends / family, and health professionals than print media
- 77 million U.S. adults have basic or below basic health literacy
- Health literacy is an issue for all racial and ethnic groups
- Lower health literacy is associated with less education
- The elderly have lower health literacy
- Adults without insurance or enrolled in Medicaid or Medicare had the lowest health literacy
- Non-print materials are important sources of health information
- 15% of adults with below basic health literacy used the internet “some or a lot” on health topics; 31% basic; 49% intermediate; 62% proficient
- For all levels, no single type of print source was as important as non-print sources
- Adults at the below basic level were the least likely to use print materials for information on health topics
- Information from health professionals was one of the most important sources for all levels
Health Story Collaborative
The Health Story Collaborative creates space for individuals navigating an illness and for those closest to them to tell their health story. They are “patient-centered, research-based, and committed to the therapeutic act of storytelling.” There are powerful stories here, as well as community-driven and -shared art.
Are you confused about health information? You’re not alone | Lisa Fitzpatrick | TEDxMidAtlantic
Dr. Lisa Fitzpatrick, MD, MPH, MPA is a CDC-trained epidemiologist and board-certified infectious diseases physician who is the founder of Grapevine Health, which takes to the streets interacting with everyday people about healthcare topics. She brings the national health literacy crisis to light.
- health literacy issues transcend race, gender, age, income, and geography
- low health literacy is expensive: $106–238 billion annually. People who have low health literacy are more likely to enter the healthcare system when they are sicker (ER, hospitalization, surgery… most expensive forms of healthcare)
- she took to the streets with a videographer to help educate people: Dr. Lisa on the Street
- the grapevine is a powerful educator, but it trends toward misinformation, creating chaos, partly because we (humans) like drama
- when there isn’t enough information reaching the public, the grapevine takes over and creates confusion. We need the good information to help counteract the bad information
- tools are outdated, including the ways in which we are communicating with people: patients are asking to communicate via text, phone, email, but we are still using things like fax machines
- medical professionals are still using terms that are uncomfortable for patients… or worse, avoiding conversations because they find them uncomfortable
- research shows that for every $1 spent on health literacy, we can save $25 (spend $1 million to save $25 million)
- some people feel that “doctors don’t listen” because of what isn’t being effectively communicated from their healthcare providers, sometimes stopping medications, needing ER, hospitalization
- manage and maintain the grapevine: bad information travels rapidly because of the drama
- if we are so captivated by devices, we should use them for health education; push healthcare providers and organizations toward technology and encourage them to catch up
- encourage people to ask when they aren’t getting the information needed; according to Dr. Lisa, that’s the healthcare system’s problem, not the patient’s
Next Steps
- Reach out to our Care Champion to discuss a few more research opportunities
- Creating interview protocols for understanding the cancer care journey
- Creating some simple cultural probes to collect some data from patients
- Reviewing related forums to see what people are asking and at which points in their journey.
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.
