T-26: Demystifying the Patient’s Experience: Use of Patient Journey Studies to Gather Valuable Qualitative Insight into the Patient

Poster Presenter

Caroline Heeyeon Seo

Senior Analyst, Patient-Centered Outcomes
Pharmerit International
United States

Objectives

This poster details key characteristics of patient journey studies, which represent an emerging research approach that can leverage qualitative methods to understand a patient’s “lived” experience to inform improvements in drug adherence, clinical trial design, and reduce treatment barriers.

Method

Using patient journey case studies, this poster highlights interview methodologies including patient and caregiver shared information that is most effective in generating actionable information about key aspects of patients’ experiences with therapeutic agents and in clinical trial settings. Authors include: Angela Stroupe, M.A. Caroline Seo, B.S. Alyssa Uzumcu, B.S. Kelly McCarrier, Ph.D

Results

In-depth, semi-structured patient-journey interviews are conducted with patients to capture relevant benefits and risks, different diseases or conditions and the patients’ treatment experience including barriers to treatment access, and burdens of disease and any unmet needs experienced by patients and their caregivers (i.e. hospital admittance, lack of support and information sharing). Qualitative interviews reveal patients’ symptoms and impacts, but also what barriers were experienced that impede receiving the most effective, comprehensive prescribed care. This information is not only beneficial for pharmaceutical development, but also enhances the patient centered data that regulatory agencies are expecting in drug development FDA submissions. Particularly important when collecting qualitative patient data, is the approach and consideration of representativeness and how to incorporate interview data by using concurrent interviews and exit interviews from clinical trial participants is featured. Using patient journey case studies this poster reveals a patient centered description of a diagnostic process, treatment pathways and disease symptoms and impacts of patients living with various diseases ascertaining unmet needs of the lived experience.

Conclusion

There is increasing appreciation of the incorporation of clinical outcomes assessment data captured by gathering information from a patient’s lived experience. These presented stories and the methodological approach to proper information collection and dissemination are pivotal to a holistic understanding of disease treatment impacts and promote improvements in drug adherence, health status, improved quality of life, life expectancy and reduce adverse events.