How my experience conducting clinical research led me to pursue a career in healthcare UX
Isn’t it strange how something that is intended to make you feel better can come with such a mix of emotions? Healthcare exists to help patients be well, but often the journey of receiving care and treatment is accompanied with stress, anxiety, annoyance, and frustration. Working in the Breast Oncology Center at Dana Farber Cancer Institute, I witnessed women who were battling a devastating disease participate in research with the short term goal of receiving some treatment benefit. More likely, their participation would aid in long term development of expanded treatment options for the benefit of patients in the future. My experience coordinating clinical research allowed me to reflect on the true healthcare journey experienced by a breast cancer patient and their care team.
Clinical trials are complex and can be highly demanding of patients and physicians. From weekly clinic visits, to numerous blood and tissue samples, to home diary documentation, we ask a lot of patients just to participate in clinical research. All of these items have reason of course, to ensure quality data collection and provide substantial evidence of safety and treatment effects. However behind the data sits a patient who experiences a journey full of ups and downs.
I was responsible for maintaining subject case files which documented all of these clinical activities. These files contained detailed medical records including histories, diagnoses, toxicities experienced, and treatment plans. Due to privacy policies, all of this information was shielded with a number, such as subject 012. Subject 012 may have experienced grade 4 neutropenia, which I was responsible for reporting to the sponsor within 24 hours. In clinical research, every action is dictated by protocols and policies. The timelines imposed on the administrative aspects of my role often left me disconnected from the human at the center of the report.
I gained joy from the aspects of my job that allowed me to spend time in the clinic talking to patients. During these moments, I often noticed how small delays and thoughtless interactions could increase frustrations among patients. Observations across many mundane aspects of the care spectrum, from waiting rooms, to diagnostic procedures, to scheduling illuminated the need to design a more empathetic, convenient, and warm environment.
I felt the tension and anxiety across patients in a waiting room.
I observed the annoyance of filling out routine paperwork at the start of each visit.
I recognized the confusion of patients navigating from blood draws to radiology to the pharmacy.
I sensed the uneasiness and lack of knowing what was to come prior to a biopsy procedure.
I witnessed the discomfort as medical assistants fumbled with faulty electrodes during ECG testing.
I noticed the untapped potential of data within the EMR for the benefit of patients and physicians.
Each of these instances present an opportunity to improve the patient, physician, or user experience in healthcare. By identifying imperfect moments and their associated emotions, I realized there is a need to innovate within UX in healthcare.
Healthcare settings by nature make people uncomfortable. Care teams often include individuals who are warm and welcoming to attempt to put patients at ease. However, outside of hiring positive personalities, there is an opportunity to introduce empathy into the entire care delivery experience. It is possible to redesign experiences and interactions from the perspective of a patient to ensure each touchpoint of the experience is aligned with their needs and emotions.
Clinical research is driven by a structure of organization and data centricity. User experience research leverages data insights and introduces creativity and empathy to understand other perspectives and strategize to improve experiences.
The field of user experience touches many industries, but has the potential to make a profound impact in healthcare. My experience in clinical research taught me to consider the patient’s perspective in every aspect of care. I am continuing my career advancing medical innovation through the lens of patients by designing simplistic and valuable products and experiences. I plan to drive impact in healthcare by ensuring the patient, provider, and user experience are always prioritized as medical innovation advances.
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