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Tuesday, April 6 • 3:40pm - 3:55pm
Person Centered Care Experiences: Designing for Patient Engagement: Developing Tools to Support and Empower Patients and Caregivers During a Cancer Diagnosis

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When a person finds out they have cancer, the stakes are high: they need to understand their diagnosis, make potentially life-changing decisions, prepare for their unique journey through treatment, and adjust to a new reality. Effective communication is essential, but a number of barriers often stand in the way, including the psychological shock of a diagnosis, the health literacy of the patient and their caregiver, the urgency to make treatment decisions, and the institutional limitations that providers face, including time constraints. Patients experience a range of emotions during their initial diagnosis: disorientation, fear, anger, even shame. When communication breaks down during the diagnosis appointment—and it often does—these emotions are compounded. At one of the most difficult and vulnerable moments of a person’s life, what does “good communication” look like, and how can healthcare teams better communicate with patients to support them through this experience? In this talk, dandelionRX and Greater Good Studio will share the process and products of their efforts to develop communication tools for healthcare professionals to use with ovarian and endometrial cancer patients that establish an essential foundation of trust, bring about learning, and empower patients to be active partners in the treatment process. To ensure the tools would meet the varying needs of these stakeholders and work within the realities of healthcare institutions, we learned firsthand from patients, caregivers, and healthcare professionals through research and prototyping, as well as engaged an advisory team of providers and patient advocates throughout the design process. We also merged our firsthand discovery with research on the efficacy of visuals and metaphors to convey complex medical information. We’ll discuss the utility of and lessons learned from employing a collaborative, human-centered design process, and demonstrate how the tools can jumpstart trust building, comprehension, and empowerment.

avatar for Amy Heymans

Amy Heymans

Co-Founder & Chief Experience Officer, Mad*Pow

avatar for Adrienne Moore

Adrienne Moore

Patient Advisor Steering Group Member, Endometrial Cancer Action Network for African Americans (ECANA).
As a Respiratory Therapist for 25yrs, I have passionately dedicated my clinical expertise to assisting my patients in improving their lives despite barriers presented to them by their respiratory illnesses. It is with that same compassion and dedication that I have navigated my own... Read More →
avatar for Betsy Ramaccia

Betsy Ramaccia

Design Research Lead, Greater Good Studio
Betsy Ramaccia is a Design Research Lead at Greater Good Studio, a design firm dedicated to the social sector. She brings a decade of experience as a researcher and strategist to her role there, where she leads projects and research with a range of partners across education, community... Read More →
avatar for Katherine Crawford-Gray

Katherine Crawford-Gray

Project Director, dandelionRX
Katherine Crawford-Gray is the Project Director at dandelionRX, a public benefit corporation dedicated to finding innovative ways to improve how healthcare teams communicate cancer diagnoses and treatment options to patients and caregivers. There, Katherine oversees the delivery of... Read More →

Tuesday April 6, 2021 3:40pm - 3:55pm EDT
Hop.in Sessions