How might NMH educate caregivers such that they feel more confident and prepared to care for their CAR T-cell therapy patient in an outpatient setting?

Northwestern Memorial Hospital (NMH)

Project:

Graduate Human-Centered Independent Study Design Course at Northwestern University

Role:

Identified user group and needs, led and synthesized user interviews.

Outcome:

Northwestern Memorial Hospital's CAR T-cell therapy program is in the process of transitioning the therapy program from in-patient to out-patient. As a result of this, the caretaker has increased responsibility and therefore needs more in-depth education on their new role. My team developed three new educational materials for caregivers as well as an updated workflow for the out-patient therapy for use by the CAR T program's team.

Key Observations

Through our consumer interviews, we identified 3 main consumer emotions.

1. Increased Responsibility: The transition to outpatient increases the importance of the caretaker role to a brand new degree. While before, the caretaker could rely more heavily on the hospital staff to monitor for adverse effects following the infusion, the caretaker now was acting as an RN -- being the first individual who would be responsible for recognizing an emergency situation while keeping the patient in a healthy and safe environment.

2. Varied Learning Styles: Through conversations with key stakeholders responsible for the education of patients and caretakers, we learned about the importance of catering the education to the different learning styles that everyone may have. The staff recognized that different learning styles exist, and currently, do their best to cater to the personal needs, but there was still a desire for resources that would allow different learners to manage all of this critical information

3. Need for Assessment: Currently, the staff depend on the patient being able to repeat the information back to them as a way to check their understanding. The caretaker, who may or may not be present at these meetings, rely on the patients understanding to know about their role. Due to the increased responsibility of the caretaker, it is clear that there needs to be a way to track or assess whether the caretaker is ready to undertake the role or not.

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Project Process

Journal Review

Contextual Interviews with Users and Stakeholders

Design and Iteration

To understand the current, complex field of CAR T-cell therapy, we formed our base understanding and examined the landscape through an in-depth journal review.

Expert interviews with individuals who have worked with CAR-T cell therapy in some form helped us to narrow down the real life problems, and our partnership with Northwestern Memorial solidified our final direction. We also conducted interview with caregivers, social workers, and the northwestern memorial staff to understand the difficulties in transitioning to outpatient, and the types of prototypes and touchpoints we might develop

In response to our observations and conversations with the staff, we developed 4 concepts for the Northwestern CAR T program to use when shifting to an outpatient therapy.

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