When I was 14 years old, I was diagnosed with polycystic ovarian syndrome. This diagnosis was a long-sought answer to questions I’d had about my body for almost five years. I remember many visits to my pediatrician, Dr. Lisa, and even more visits to specialists.
These appointments were part of a long journey to understand what I was experiencing. As a child, I gained weight despite eating the same meals as my slender sister. I missed days of elementary school due to debilitating abdominal pain. And through all this, I became increasingly and inexplicably anxious.
20 years into my diagnosis, I still struggle to navigate the healthcare ecosystem. I struggle even though I have a master’s degree in medical sociology and access to the most advanced clinical analytics.
My personal history enables me to excel in my role as a Principal Customer Success Manager at Definitive Healthcare. My experiences navigating the healthcare system help me to be a better partner to my clients, improving their understandings of specific therapy areas.
Over the course of my career, I’ve worked with clients in every market from common diagnoses to rare diseases. I support my clients in key areas like account segmentation and understanding patient journeys.
Before my diagnosis, I remember how overwhelming it felt to talk about my symptoms. As a 10-year-old girl, I didn’t have the vocabulary to explain what I was feeling. I knew something was wrong, but I didn’t know what it was or how to find out. I remember my parents’ frustration while trying to navigate these questions and complications.
My personal experience has given me a unique view into the patient journey. When considering a therapy area, it’s important to think of the various ways a disease presents in patients. Consider which symptoms are most likely to affect a patient’s quality of life. Patients may not seek care for certain symptoms until they impact the ability to perform day-to-day tasks. Even then, patients may only see a doctor for treatment of those symptoms and not the larger cause.
For example, patients with multiple sclerosis may first seek physical therapy treatment for muscle weakness or rigidity before seeing a neurologist. Patients experiencing mood swings or panic attacks might see a mental health provider instead of the endocrinologist who will diagnose them with hyperthyroidism.
My own set of symptoms led me to a variety of different specialists, including:
• Nutritionists, and
• Mental health providers
I exhausted all of these avenues before seeing the gynecologist who gave me a diagnosis.
Patient journey analyses help us understand typical care pathways and healthcare engagement. But they can also shed light on the way that patients experience their bodies and symptoms.
Before a proper diagnosis, it’s hard to consider just one aspect of a patient journey that might affect someone’s treatment path. The confluence of hyper-specialized providers, direct-to-patient marketing, and Dr. Google have reduced complex disease states to sets of symptoms. You need a holistic view of a person’s experience to understand their patient journey. Medical histories and parallel diagnoses can indicate how patients think of and learn about their symptoms.
For example, people living with rheumatoid arthritis experience the disease in ways that may not immediately lead them to speak with a rheumatologist. They may Google things like “hand pain,” or “sore hands,” or “why do my hands hurt?” These searches are more likely to produce results that reference carpal tunnel syndrome and tendonitis before arthritis.
Another person living with rheumatoid arthritis may ignore symptoms like mood or sleep changes. After all, it’s easy to chalk these symptoms up to a change in season, or pandemic fatigue. Patients who ignore their symptoms may not see a doctor at all.
As a “patient,” I frequently ask myself about the source of my pain. Is it related to my diagnosis, or is it because I’m 34 and tweaked something? Is my heightened anxiety an indicator I’m not managing my PCOS well, or is it due to the stresses of working from home during a pandemic? Should I talk to my primary care provider, make an appointment with the endocrinologist, or take an Advil and sleep it off?
Patient journeys offer important insight into how your patients engage with healthcare. They can also help you better understand how your patients think about their bodies, the language they use to explain their experience, and where they think they should seek care.
Understanding what a patient’s early diagnoses were and which provider types they visited along their journey can help you and your team meet patient needs and support them holistically as people—and not as a compilation of their WebMD searches.
Would you like to know more about how providers and healthcare organizations find undiagnosed and complex patient cohorts? Visit our PatientFinder platform page and discover how users filter patient populations based on reported symptoms, diagnosis, and procedure history.
Are you interested in understanding more about how social determinants of health impact patient outcomes?
Read Diversity in Social Identity and Healthcare in 2020, also written by Brittany Morin-Mezzadri. This includes everything from religious and cultural beliefs to representation in healthcare marketing. Discover how patient backgrounds change how and when they decide to visit the doctor.