Why we did this

Living with narcolepsy often feels like fighting an invisible battle with unpredictable symptoms and overwhelming fatigue. PwN typically lack effective tools to manage their condition. Our team set out to address this gap by developing a digital companion that would evolve over time to help PwN track their symptoms, receive real-time personalized support, and gain insights to better communicate with healthcare providers. We aimed to launch this alongside a new narcolepsy drug treatment, helping PwN track their responses to the medication. However, due to COVID-19, the project was put on hold before its full launch.

Problem

People with narcolepsy often face fragmented symptom tracking and the overwhelming cognitive burden of managing their condition. Without a streamlined system, they frequently miss capturing key data, limiting their ability to understand symptom patterns. This challenge contributes to the high rates of misdiagnosis—up to 60% of PwN are initially misdiagnosed. The lack of reliable information also makes it difficult for healthcare professionals to deliver personalized care and adjust treatments effectively. As a new narcolepsy drug was being introduced, there was a critical need for patients to monitor their responses to the medication. Without proper symptom tracking, patients and doctors might miss important data on how the new treatment was affecting them.

Given these challenges, we designed a digital companion app that would streamline symptom tracking, minimize cognitive load, and help healthcare providers offer more personalized care based on real-time data.

Solution

We developed a phased digital companion app with a user-friendly interface that allowed PwN to quickly log symptoms, visualize trends, and share summaries with their doctors. The app was designed to evolve across three phases:

• Phase 1: Uncover the Needs – The initial focus was to help users log daily symptoms like fatigue, mood, and cataplexy episodes, allowing us to uncover their ‘in the moment’ needs.

• Phase 2: Support the Needs – Based on the data collected, the next phase would provide PwN with personalized content such as articles, journaling activities, and tips to support them when needed.

• Phase 3: Report the Needs – The final phase would generate insights, trends, and patterns based on their logged data, helping PwN and healthcare providers better understand how symptoms relate to lifestyle factors and treatments.

We aimed for the app to be released in tandem with the new drug, giving PwN a streamlined way to track their symptoms and treatment responses in real-time.

This solution was conceptualized to address these issues, though it was not fully built due to shifts in project focus during the COVID-19 pandemic.

Key Features

• Quick Symptom Logging: A simple interface for fast daily entries.

• Trend Visualization: Clear reports showing symptom patterns over time.

• Doctor Summaries: Planned feature for exportable data summaries, enabling more informed healthcare appointments.

Designing the Quick Symptom Logging Feature

One of the key insights from our research was the need for PwN to quickly and easily log their symptoms without adding to their cognitive fatigue. To address this, we prioritized simplicity and speed in the design of the Quick Symptom Logging feature. Below are some wireframes that illustrate our initial approach to creating a low-friction experience for users.

The goal was to make symptom logging as effortless as possible, allowing users to input their symptoms in just a few taps while still capturing critical data for tracking patterns over time.

Building on this, we designed the interface with clear icons and a straightforward layout, to enable users to log key symptoms like fatigue, mood, and focus quickly. While we aimed for this approach to integrate symptom tracking seamlessly into daily routines, reducing cognitive strain and promoting regular engagement, we didn’t have the chance to fully build it out. As a result, we were unable to validate whether users would have responded positively to these design decisions.

Improving Symptom Tracking for Accurate Diagnosis

These screens enable users to log symptoms with detailed timestamps, triggers, and descriptions, providing a comprehensive record of their condition over time. By offering an organized, accurate view of symptom patterns, this data becomes a valuable resource for healthcare providers to identify trends and potential triggers. This level of detail can greatly assist in making the right diagnosis and adjusting treatment plans more effectively, reducing the likelihood of misdiagnosis and ensuring patients receive the most appropriate care.

Chatbot via Push Notifications

We decided to use a chatbot for gathering quick information from users based on insights from our research. Users expressed a need for an efficient and straightforward way to provide updates on their symptoms without feeling overwhelmed. Given the cognitive fatigue that people with narcolepsy (PwN) often experience, traditional input methods seemed too cumbersome.

The chatbot provided a familiar, conversational interface that could allow users to input information quickly with minimal effort. It was intended to be implemented during the patient registration process and through push notifications in the morning, afternoon, and evening for daily symptom check-ins. This approach could reduce friction in data entry and create a more supportive, personalized experience when discussing sensitive topics, aligning with users' need for simplicity and comfort.

Potential Future Enhancement

Hypothesis:

Move the three tracking options that ask users how they feel from the homepage to a single daily check-in with a clear call to action.

This approach may boost user engagement by reducing notifications to one check-in per day, rather than sending three separate notifications. Establishing a consistent habit of a daily check-in could help them better identify patterns in their symptoms, particularly when visualized alongside a baseline for comparison.

Outcome

Although the project was put on hold due to the impact of COVID-19, we successfully developed a comprehensive design solution that addressed the core challenges PwN face with symptom tracking and communication with healthcare providers. Our research provided valuable insights into user needs, which informed key design decisions such as quick symptom logging, trend visualization, and future features like doctor summaries.

While we were unable to fully implement and test the solution, the groundwork has been laid for a future iteration that has the potential to significantly improve symptom management and doctor-patient collaboration for PwN.