When patients cross the threshold into the exam room to consult a clinician, it’s the healthcare provider’s job to unravel the mystery of symptoms they are experiencing. Patients arrive expecting answers. Often carrying a satchel of dread and stress, maybe some notes. 

“Write down your questions,” a helpful friend may suggest to them.

“How about, ‘What’s wrong with me?’ Will that do?” 

It won’t. 

In medical school, doctors are taught two things that impact patient-clinician communication and the ability to determine a definitive diagnosis: (1) 90% of a diagnosis comes from the patient’s symptoms story and (2) when patients describe their symptoms, they will be thinking zebras (rare conditions) and you, future doctors, are to think horses (common conditions). 

In theory, it makes sense. In practice, it puts the patient in an impossible situation. If the patient is not able to tell a comprehensive symptoms story, the likelihood of diagnosis plummets. And when the doctor is focused on common causes of the patient’s symptoms, they may believe only the top few symptoms are required before determining differentials. 

Today, with the rise in common chronic conditions, zebras have become horses. What may have been an unlikely diagnosis, such as endometriosis, is now a horse: 1 in 10 females have endometriosis, which can take up to a decade to diagnose. 

When 90% of a diagnosis comes from the patient’s symptoms story, and in the case of female healthcare, common chronic conditions such as endometriosis, PCOS and AUB (abnormal uterine bleeding) remain undiagnosed for years, the problem is simple to isolate: patient-provider communications are not effective. And no one told the patient that the lion’s share of the diagnosis is their responsibility. 

This experience frustrates everyone. Patients want to get well, clinicians want to help them do so, and their dialogue is the manner through which both achieve their goals. 

According to this study, researchers found that interruptions occur quite early in the patient’s expression of their symptoms experience and that patients are given just a few seconds (an average of 11 seconds before interruption) to tell their story. This means that the patient is prevented from telling a full and complete symptom story, potentially leading to a delayed or missed diagnosis. 

In our interviews with patients who are experiencing common chronic conditions that affect females, they describe their experience communicating with healthcare providers as “frustrating”, “dismissive”, and “traumatizing.” Those who have lived with undiagnosed chronic conditions feel gaslit and are often forced to see multiple providers over time hoping one will listen to them. Many feel unprepared to adequately relay their symptoms and therefore help their clinicians guide their care. Resources are squandered, patients abandon the care pathway, and chronic conditions progress, soaking up more resources. 

To improve the conversation, patients need to be heard. Move beyond the “What brings you in today” icebreaker and lead instead with “Tell me about your quality of life.” Followed by, “How are your symptoms impacting your quality of life?” And then listen. For as long as the patient needs to speak. Detectives don’t rush eyewitnesses through their story, and neither should clinicians.

While clinicians may prompt patients to keep a record of their symptoms, this does not go far enough to explain the importance of and need for the data. Patients want to know ‘the whys’: why they’re experiencing symptoms, why treatments and lifestyle choices will have an impact on their condition, why they are 1 in 10. Understanding the why is part of shared decision-making and leads to informed (not by Dr. Google), confident patients who are ready to take action to improve their health. A clinician’s dream.

As we look ahead, it is integral that healthcare providers encourage patients to maintain a detailed symptoms record as part of a health diary to more effectively manage their health concerns.

Encouraging and enabling patients to maintain a detailed, daily symptoms record focuses the patient on productive engagement with their symptoms experience. The patient becomes in tune with their body over time, prepared to participate in shared decision-making, and empowered with their self-recorded data, which is the evidence needed to work with their care teams to quickly diagnose the root cause of their symptoms. 

In this scenario, the patient-clinician consultation now jumps ahead to connecting the dots on the patient’s symptoms data. This saves time in consultations, reduces the time from symptom onset to diagnosis, and creates a healthy dialogue between patients and clinicians. 

Healthcare professionals are overburdened by administrative duties and pressures to be profitable, stacked with patients, and distracted by multiple messaging interruptions. Many patients believe there’s nothing that can be done for their symptoms because of being dismissed by clinicians in the past. The experience of healthcare for everyone is more stressful now than ever before. Processes and procedures have been optimized for efficiency and better outcomes, except for the patient-clinician conversation. Fixing the structural flaws of conversations in the exam room enables patients and clinicians to do what they both really want to do: connect the dots on symptoms and get the patient on the path to wellness without delay. 

Carol Johnson is the Founder and CEO of Uterinekind, a symptoms tracking and health education app that improves the experience of uterine care for everyone. With 10+ years in consumer health marketing as an agency founder, strategist, writer, and user experience designer, and a personal history living with undiagnosed celiac disease and fibroids, which impacted fertility, Carol is passionate about helping people become citizen scientists of their own bodies so they can confidently participate in shared decision making with their care teams.