And We’re Back! Cleveland Part 2
Revisiting the liver transplant journey through the eyes of a caregiver
Greetings, fellow Medium readers! It’s been a few months since we last spoke, but rest assured, we have been hard at work continuing to understand and design for the patient / caregiver journey. Since our spring presentation, Team Panacea has dived headfirst into evaluative research, platform redesign, and extensive field research. In this article, we will tell you a little more about our recent visit to Cleveland and their Transplant House facility, as well as our plan for the summer moving forward.
Springing into Summer
Coming off of a brief break after a very long spring semester, our team had several ideas in mind for how we wanted to approach the summer. After reviewing our team goals, as well as our individual goals, we discovered we had many lingering research questions from the previous semester, especially with our new focus on the caregiver perspective.
Some of our research questions included:
- Is there a difference in mental models between patients and caregivers?
- If so, what is/are those differences and how do those differences impact our design?
- Is there a difference in the way in which users interact with the platform based on chronology? (i.e. where they are in the liver transplant process?)
- If so, how might we incorporate this difference in our design?
- How do patients and caregivers respond to our current iteration of the MedRespond redesign?
While we could continue to do generative research on local surgery patients or hold design workshops in-house, we realized that we needed to go back to the source itself and talk to patients and caregivers at the Transplant House in Cleveland. It was time to make some calls.
Return to the Land
Having established a relationship with the Transplant House in advance was key in helping us figure out what activities were within scope for this round of evaluative research. Now that we had the flexibility and context to plan our own field research excursion, it was critical to nail down our research goals and plan of action to a T. One of our biggest takeaways from the spring semester was how often caregiver needs fall under the radar despite their level of involvement in the liver transplant process. In this trip, we wanted to focus more on the caregiver experience and compare their unique user journeys to those of the patients we had interviewed in the past.
Starting early Thursday morning, we kicked off a full day and a half marathon of interviewing patient/caregiver dyads at the Transplant House of Cleveland, where we originally visited back in March.
In comparison with our last visit to Transplant House, this time around we better understood the larger context of the transplant patient journey, which made it easier to identify and dive into some finer details that were still unclear to us. Also, while our first visit was mostly spent on exploratory research and familiarizing ourselves with the problem space, this time around we had actual designs we wanted to test and specific research questions we wanted to validate.
For a good mix of both exploratory and evaluative research, each of our interviews with patients and caregivers consisted of the following activities:
- Directed storytelling — Brief interview of patient /caregiver background with collaborative timeline sketching.
By working together to sketch the user journey, we were able to identify areas of high emotional or informational need as well as validate our research regarding the patient/caregiver mental models of the journey. - Card-sorting activity — Observe patients/caregivers as they sort and organize information relevant to the patient journey
We wanted to find when patients or caregivers are handed several pieces of information at once, what information bubbles up to the top as most important? What falls by the wayside? In addition, does the importance of different information change over time based on time (where they are in the process) or role (if they are a patient or caregiver)? - Think-alouds of our redesign or of the existing MedRespond platform — Ask users to use one of the two systems while continuously verbalizing their thoughts as they move through the interface
By thinking aloud, we could document how users feel about using these interfaces in real time, identifying areas where our design succeeds and, more importantly, discovering areas where our design could be improved. We performed think-alouds on both the existing MedRespond interface as well as our redesign to get feedback on both designs and try to use the best of both designs to inform future redesign. - Follow-up survey on system usability, look, and feel — Have respondents fill out a brief survey at the end of think-alouds for quantitative feedback
After all of the tasks, users were given a short survey split in two sections, one focused on the overall usability of our redesign and the other on the look and feel of our redesign. We used the system usability scale (SUS) and bipolar emotional response test (BERT) to measure user perceptions of our interface and quantify these perceptions to use as metrics to measure improvement between redesigns.
Prior to our visit, we piloted our research exercise on two of our classmates in the lab who were unfamiliar with our research. Once at the Transplant House, we interviewed 13 participants (7 patients, 6 caregivers) as well as one subject matter expert employed with the Transplant House. We had a great mix of patients and caregivers of all transplant types, as most transplant patients (be it liver or kidney or even lungs) tend to follow similar journeys waiting for and receiving their organ transplants.
Reflections
After a long day of research, we took some time to decompress and process what we had learned from our day at the Transplant House.
Despite our thorough planning and pilot runs back at the lab, it became evident from the initial interviews that we could have benefitted from more practice runs of our research activities, especially with individuals who didn’t necessarily have a computer science background. While our cohort teammates were great at giving us technical feedback on our platform, they weren’t representative of the user base we intended to interview. In the future, we definitely would want to run more extensive pilots on individuals with varying technical backgrounds to better identify questions or procedures that need more clarification.
For just a three day trip, we learned a ton about conducting field research on our own, both the good and bad parts.
What went great
- Scheduling times to adjust to the environment and get acclimated — we were on our own schedule so we were able to go to Cleveland early and get settled without feeling rushed or tired.
- Being resourceful in our interviewing styles allowed us to capture the maximum amount of data with limited resources. Initially we thought we would have at least 2 people per interview but as more participants arrived, we were able to divide and conquer appropriately.
- Take advantage of participants with a technical background — we were lucky to interview some users who had backgrounds similar to UX, and as such we definitely appreciated receiving in-depth feedback on our designs from industry experts.
- Scheduling time to breathe! —We made sure to take breaks and see the city of Cleveland. Not only did this give us a way to decompress, it helped us think about potential distractions or suggested activities to include in future liver transplant programming to help patients and caregivers take their mind off of things.
What we’ll do more next time
- Pilot, pilot, pilot! — Varying interview styles led to variability across interviews, so no two interviews followed the exact same format. While this is hard to control for as every interviewer has their own style and every participant their own needs, more practice prior to the trip would help make sure each of us were being consistent as possible across participants, even if each interview wasn’t perfectly identical.
- Create tasks that are less cognitively demanding for users, especially users who are already under a lot of mental stress — While we probably won’t do card-sorting again, we want to make sure future tasks are simple and straightforward. Piloting on non-technical users can also help us troubleshoot our activities and spot areas where people may get stuck
- Roleplaying as patients with varying perspectives and backgrounds — When developing our research protocol, we unintentionally designed it assuming interviewees would behave like the “ideal” participant, following all of our requests without question or confusion. In reality, because we were so familiar with our protocol and prototype, we neglected to keep in mind that we weren’t the user and that actual users may have a lot of questions along the way or may not find your design straightforward or even useful. In the future, it’s important to pilot your protocols with users who are not as close to the product or have varying levels of technical expertise to be mindful that we are not the user.
What’s next for Panacea?
Even though our Cleveland visit was merely two weeks ago, we are focused on the future. With two short months remaining of our program, what will Panacea be working on next?
Getting into a rhythm — Armed with our new research insights and design recommendations, we plan to dive into a repetitive design/test/evaluate cycle in the following weeks. Now that we’d performed a couple full turns of the iterative design process, we could go through each cycle more quickly and advance our design more effectively.
Going local — We will start working more directly with local transplant houses and other similar organizations to keep the evaluative research going strong without having to schedule a full trip to Cleveland every time. We also will leverage more peers and non-transplant patients to encompass as many perspectives in our feedback as possible.
Expanding our focus— We want to focus on designing for accessibility and edge cases to be more inclusive of the entire patient/caregiver space. We also want to further explore the conversational aspect of MedRespond, using in-house conversational user interface experts and findings from literature reviews to take the CUI design to the next level.
Getting out of the lab — One of the key reasons our trip to Cleveland was so successful was our ability to schedule in time for breaks and reflection. We will continue exploring ways to hold meetings offsite or in other environments to keep morale high and also inspire creativity in future design. Also, any chance to check out more art museums is a definite plus.
Until next time, Panacea out ✌️
About this PublicationWe’re writing the MHCI 2019 Capstone: Team Panacea Publication for a couple of reasons.First, we want to give you an exclusive behind-the-scenes tour of our capstone experience: the successes, failures, thoughts, insights, and innovations.Second, we would love to engage with you around the healthcare domain (Pittsburgh’s #1 industry!), so please follow / clap👏👏👏 / comment / share /reach out to us — we’d love to hear your thoughtsFinally, check out our ongoing project page for updates here!
