The CPRA took notice when Evidation Health announced a new study called the DiSCover Project (Digital Signals in Chronic Pain). We sat down with Evidation’s co-founder and president, Christine Lemke, who has chronic pain herself, to learn about this exciting new initiative and how those with pain can participate.
CPRA: Could you share with our readers a bit about your personal experience with pain?
LEMKE: About 10 years ago, I was diagnosed with a genetic disorder – it’s a form of arthritis, which results in chronic pain that can be pretty severe. I am lucky. Most of the time, I’m able to go about my day without significant impact, but when I have a flare, the pain can be debilitating. My experience with the health care system has been frustrating. It took physicians years to diagnose me, and there weren’t effective ways to measure my pain or to identify its triggers. The most that was offered was for me to keep a pain diary. It felt pointless and frustrating to diarize my pain episodes when my physicians didn’t know what was wrong with me. Even today, most of my conversations aren’t grounded in any objective measures. I know millions of others experience the same frustration, and I thought that there must be a better way.
CPRA: How did your experiences lead to launching the DiSCover Project?
LEMKE: I wanted to develop a study that would provide a solution to the frustration that I and millions of others with pain experience—the lack of objective pain measures. My company, Evidation Health, is a technology and services company helping individuals and the world’s most innovative healthcare companies understand and influence the everyday behaviors that create better health outcomes. I wanted to bring this innovation into the pain space.
CPRA: What kind of data will be collected and analyzed?
LEMKE: DiSCover will collect data directly from people with chronic pain as they go about their daily lives. It’s a completely virtual study, so no in-person visits are required. Patient-reported outcome data, where patients intermittently tell us how they’re feeling, will be correlated with behavioral data from activity trackers and health apps, voice and speech data, lab test results, and genetics, as well as geographic, weather and socioeconomic data.
CPRA: How many people are you aiming to enroll? Over what time frame?
LEMKE: To our knowledge, DiSCover is the largest chronic pain study to date. We plan to enroll 6,000 pain patients and 4,000 controls from across the U.S. over the next year. We need people with all types of chronic pain disorders to join the study so that we have enough data to identify correlations and factors common across pain disorders.
CPRA: What will you do with the collected data?
LEMKE: By comparing the experiences of those with chronic pain to those without, we aim to use the data to understand important aspects of chronic pain, such as triggers, flares, and impact on quality of life. We plan to develop algorithms that can begin to objectively rate quality of life, as well as individualized models that can help predict when a pain flare is starting, based on previous patterns. Everyone is unique, so we need to personalize our models down to the individual level. We plan to publish our findings, so that the field as a whole can benefit and build upon DiSCover’s findings.
CPRA: Where can people find more information?
LEMKE: The DiSCover project is looking to enroll people with chronic pain in the United States who are 18 years and older. Volunteers who do not experience pain are also welcome. Learn more and go through study screening to see if you qualify here.