Big Data and Patient-Powered Research

Saturday, February 13, 2016: 1:00 PM-2:30 PM
Marshall Ballroom North (Marriott Wardman Park)
Lorraine Johnson,, Los Angeles, CA
Today, disruptive technology and sociological factors are allowing patient-powered research projects to take the helm in seeking solutions to medical problems impacting patient lives. Technological forces, including computer advancements, are fueling change and enabling big data research, which draws upon the 3Vs: volume (vast data pools), velocity (quick research), and variety (types of data).

In addition to being able to compile and analyze individual medical data on a large scale, these advances allow research to move from the ivory towers of academia to patient organizations. Patient-powered research is driven by patients and holds their interests at the center. Patient groups and researchers have good reason to embrace this transformation, given that traditional research trials can take years to complete, are costly and may not be based on real world patients/treatments. Government agencies have responded by launching big data projects. The Patient-Centered Outcomes Research Institute has funded over 18 patient-powered research projects and both the FDA and the NIH have big data projects under way.

Chronic Lyme disease is the perfect example of the need for big data research to effectively begin solving treatment issues where patient populations are heterogeneous, treatment approaches are complex and financial resources remain scarce.

In 2013, the CDC revised its estimate of reported Lyme disease cases, elevating the disease from a rare condition, affecting only 30,000 patients each year, to a common condition, affecting more than 300,000 people annually. Despite this, chronic Lyme disease remains research disadvantaged with only three small treatment trials funded by the NIH. But now, patient-powered, big data projects can produce vast amounts of data to quickly and inexpensively begin addressing research needs of this underfunded disease.

Patient registries and research platforms, like MyLymeData, are leading the way toward a new type of research that not only offers observational data, but also acts synergistically with traditional research approaches by creating research ready populations, developing and vetting early pilot study data, providing long-term treatment follow-up, and assessing the generalizability of findings from randomized controlled trials. Within its first week of launch, MyLymeData enrolled over 1,000 patients, paving the way for research essential to improving patient quality of life.