Unveiling the hidden patient journeys

By: Jane Xia BSc.Pharm, PharmD, MBA and Simon Albon BSc, MSc, PhD

Last year I (Jane) faced a serious life-threatening illness. As my first real exposure to the healthcare system as a patient, what I experienced was eye opening. Encountering specialists with diagnostic uncertainties, emergency doctors offering sub-therapeutic treatment, medical residents who were great diagnosticians but showed little empathy, and nurses-in-training struggling with IV needles left me in a state of helplessness. The treatment path was blurry and frustrating. No one was interested in or even asked about my experiences. As a patient, I felt insignificant. Reflecting back, the ordeal would have been much less distressing had I received personalized information about what to expect, what patients go through and approaches to self-management. I also realized that my background as an experienced practitioner was instrumental in helping me navigate the experience, an advantage few patients have. What were their experiences like? Did they feel insignificant? Were their journeys fraught like mine?

After working in academia, I quickly recognized that many students have very little personal experience with diseases or health care navigation. It has been a challenge to develop skills and attributes for students to engage patients and provide care with empathy and deeper understanding. Without knowing the stories behind a disease, how do students really understand the pain and frustrations a patient experiences? My colleague Simon and I had long conversations and thought it was a valuable topic to integrate into pharmacy education. We then dove into the literature on patient journeys.

Literature on Patient Journeys

Presently, there is very little research available on patient journeys in pharmacy education. What we discovered from literature on patient journeys are from two contrasting perspectives. The predominant view of the health care provider is exemplified by Girerd and colleagues for treatment of chronic heart failure (CHF).¹ From their perspective, the patient journey is a series of steps in the treatment of the disease from pre-hospitalization and emergency room care through hospitalization to discharge with the aim of reducing CHF related morality.¹ Each step is associated with the best research-informed tests. Patients are categorized into age, sex, signs and symptoms tables and presented as a set of clinical test results defining the success of treatment or subsequent cycles of medical intervention. The objectification of the patient from this view seems to validate Jane’s experiences. Nieiman et al, similar to Girerd et al’s approach, recognizing the shortcomings in this dominant approach, convened a panel of 34 experts from 21 countries to explore the treatment of CHF through quality of life tools involving the physical, emotional and social situation of the patient.² The panel recommended direct patient involvement (along with family members and caregivers, as necessary) in all treatment decisions and subsequent treatment guidelines.²

Kuo et al provide the second and little researched view of the patient journey that puts the patient voice at the center.³ Focusing on treatment of rosacea, these researchers define the patient journey as a map of personal steps a patient takes through different segments of a disease from diagnosis to successful follow-up and disease management.³ A concept applicable to any disease state, this view of the patient journey highlights the anxieties and roadblocks that patients face during the course of a disease. We concur with Kuo et al’s suggestion that understanding patient’s subjective experiences in disease treatment would improve care, treatment adherence, patient satisfaction and make the health care system more efficient.³ So how do we translate this into pharmacy education?

Patient Journeys and Pharmacy Education

Patient experiences and journeys can provide valuable insights for pharmacy education. Simon and I continue to have this conversation and we truly believe that providing patient perspectives can help students contextualize their learning and elicit empathy. I share one example below.

Over the summer, I (Jane) had three directed studies students pilot a potential elective course called Patient Journey to Better Health Outcomes. The purpose is for students to understand the steps patients take from initial signs and symptoms to diagnosis and chronic disease management. Students interview patients and other healthcare providers to gain a comprehensive understanding of the healthcare system. Collectively, students reflected that they have developed empathy for patients, better communication skills, and an appreciation for the complexity of chronic disease management. In their final presentations, students highlighted that patients have a lot to teach them about providing better healthcare services for better health outcomes. From an instructor’s perspective, it appears that patient journeys are helping students contextualize their learning.

Currently, students have very little personal experience with diseases or health care navigation. Perhaps one way to overcome the challenge to develop skills and attributes for students to engage patients and provide care with empathy is to contextualize their learning with patient journeys and experiences. What are your thoughts on incorporating patient journeys in pharmacy education?

References:

1. Girerd N, Seronde MF. Integrative Assessment of Congestion in Heart Failure Throughout the Patient Journey. JACC: Heart Failure. 2018;6(4):273-285.
2. Nieminen MS, Dickstein K. The patient perspective: Quality of life in advanced heart failure with frequent hospitalisations. Int J Cardiol. 2015;191:256-264.
3. Kuo S. The Rosacea Patient Journey: A Novel Approach to Conceptualizing Patient Experiences. Cutis. 2015;95(1):37-43.

Jane Xia is a lecturer at the University of British Columbia Faculty of Pharmaceutical Sciences. Educational scholarship interests include patient experience, patient journey, and patient advocacy. In her free time, Jane enjoys spending time meditating and exploring the outdoors.

Simon Albon is a Professor of Teaching at the Faculty of Pharmaceutical Sciences at the University of British Columbia. Educational scholarship interests include scholarly teaching and the Scholarship of Teaching and Learning. In his free time, Simon is an avid fly fisherman.

Pulses is a scholarly blog supported by Currents in Pharmacy Teaching & Learning