Silent Suffering: Looking at the Migraine Epidemic with Everyday Behavior Data
Looking at the Migraine Epidemic with Everyday Behavior Data
In 2016, the World Headache Alliance described migraines as a “forgotten epidemic.” Today, migraines remain a high unmet need globally and have grown to be the leading cause of disability for those under the age of 50, according to the Global Burden of Diseases, Injuries, and Risk Factors (GBD).
That’s why our team of in-house researchers and data scientists reached out to thousands of individuals who self-reported a medical diagnosis of migraines that we further validated and classified using ICHD-3 criteria.
We directly consented participants for this particular research project and gathered passive, continuous behavior and health data from smartphones, wearables, and other connected sensors, enriched it with patient reported information, and further labeled it with a validated, commonly-used instrument to assess migraine disability: the Migraine Disability Assessment (MIDAS).
Everyday Behavior Data
As part of the initial survey, participants in this project provided consent for us to analyze 90 days of their historic activity data to better characterize their physical function and sleep.
We saw that individuals with a higher frequency of migraine headache attacks (chronic type) are less physically active than their counterparts with a lower frequency (episodic type). When looking at overall disability, those who had a MIDAS grade of severe disability have higher variability in nightly sleep hours than those with little or no disability.
Breaking Down Patient Engagement By Migraine Type
To better understand patient engagement strategies, we asked individuals about their barriers for reducing migraine frequency and what services they felt would be most important to help them reduce their migraine burden.
More than one-third of individuals with chronic migraines stated that their current treatment regimen does not relieve their migraines, a clear indication of the significant unmet medical need. Across the board, individuals are seeking services that can help them better manage their migraines. With financial assistance ranking first, it’s not surprising to see Lilly offer patients their drug without charge for the first year. Behind the costs, individuals told us that personalized reports and insights were the most important services to help reduce their migraine burden. Fifty seven percent (57%) of individuals with migraines (both types) cited reports for helping understand their own behaviors and environment affect their migraines and 54% cited them for understanding whether their migraines were getting better or worse.
Given individuals’ desire to better understand their own migraines, we thought more individuals would be using a systematic method of tracking their migraine symptoms, treatments, and experiences. It wasn’t true. Almost 60% of migraineurs are not currently tracking, leaving a significant opportunity in the market. The most popular method of tracking remains pen and paper; in addition, more individuals cited using their wearable device to track migraines over a dedicated smartphone app. In the other category, some told us they track migraines directly on their digital calendar (e.g., Google Calendar).
Current Medication Usage By Migraine Type
Our survey also captured medication use across the migraine types, indicating a minority are not using any medications to treat their migraines. It’s obvious that the anti-CGRP class is off to a strong start, with 4% of those with chronic migraines already using these brand new treatments alongside 0.4% of those with episodic migraines.
Based on the insights above, in the future, we intend to potentially investigate what triggers migraines.
Achievement members who have migraines are particularly relevant to a broader research effort that our in-house team is developing to learn more about the chronic pain epidemic in America. With a subgroup of Migraine participants, the DISCover Program is exploring the relationship between digital signals like physical activity and sleep and pain severity, flare-ups, and quality of life. After completing enrollment in nine months, our research team is focused on uncovering new insights about chronic pain across medical conditions ranging from arthritis to migraines to cancer. Read more here.