iConquerMS™ Uses Big Data Approach to MS Research
Your health data + my health data x 20,000 = BIG DATA!!
I am excited to be part of iConquerMS™, a unique patient-driven research initiative established by The Accelerated Cure Project for MS, that offers a new way to conduct research into the topics which are of greatest interest to people living with MS. At iConquerMS.org, thousands of patients will join forces to create one of the largest voluntary databases dedicated to facilitating MS research. Our goal is to have 20,000 active participants who represent the entire spectrum of MS. Read more about the project in Laura’s post What Will It Mean When iConquerMS™?
So what is meant by ‘Big Data’ in medical research?
I asked Dr. Ken Buetow, the iConquerMS™ project team’s informatics expert from Arizona State University and former director of the National Cancer Institute's Center for Biomedical Informatics and Information Technology, to explain.
“Big Data in biomedicine refers to large quantities of diverse types of data -- clinical care encounters, demographic, geographic, individual clinical experiences, lifestyle, personal preferences, and molecular characterizations from tens of thousands of individuals. With Big Data, one has the possibility of discerning patterns and associations that would be undetectable through traditional approaches,” according to Buetow. “I’m reminded of the Michaelangelo quote that ‘every block of stone has a statute inside it, and it is the task of the sculptor to discover it.’ One might say all Big Data contains insights and it’s the job of the data scientist to find them!”
Big Data has the capacity to turn anecdote into evidence.
The more information that is shared, the better equipped researchers will be to discover patterns associated with smaller, more specific, segments of the MS population. With more data points, our multitude of individual anecdotes and experiences become a pointillistic tapestry of evidence which can begin to answer more interesting questions about the disease and its treatment.
How does it work?
“By embracing the Big Data paradigm, iConquerMS™ enables research that complements traditional approaches,” says Buetow. “iConquerMS™ collects large volumes of diverse data from all who are interested in sharing information. Questions are then asked against the collected data. These questions can come from both the research community and iConquerMS™ participants. Instead of conducting a new research study for each question – contacting new individuals and collecting new data – the data previously shared can be queried and evaluated.”
There are two features which distinguish iConquerMS™ from other patient research programs, such as those at NARCOMS or PatientsLikeMe. 1) At iConquerMS.org, the participant is invited to suggest research topics that are of interest to him or her; and 2) patients will be able to submit Electronic Health Records (EHRs) which will greatly enhance the data available to researchers beyond what is collected through targeted surveys.
How does Big Data research compare to traditional research?
“Because computer-based analysis of data is relatively inexpensive compared to traditional research studies, one can ask a myriad of questions, and dynamically keep evolving the questions,” says Buetow. “Big Data can also use the computer and the availability of large quantities of data to recapitulate what is done in a traditional research protocol. If deemed important, it is possible to select subsets of individuals with specific characteristics and to examine patterns within these subgroups, which may well lead to greater personalization of interventions.”
“While Randomized Clinical Trials (RCTs) remain the ‘platinum standard’ for generating evidence in biomedicine, it is simply not possible to conduct an RCT for every possible question and every possible personalized combination. Big Data fills a needed evidence gap,” says Buetow. “More importantly, Big Data analytics can be used to ‘mine’ large data collections for non-obvious relationships – to discover unexpected, or previously unidentified, relationships. Computers can be harnessed to be tireless interrogators of data. RCTs can be used selectively to verify findings of critical importance.”
What excites you about the potential of iConquerMS™?
“Data can be a limitless resource – shared with all who have valid questions to ask. Through iConquerMS™ access to appropriate data is no longer a barrier to asking critical questions in Multiple Sclerosis. Unlike more traditional research datasets which are limited by the narrow questions originally asked and the ability to combine them, in iConquerMS™ the rich diversity of data supports many combinations of questions. This eliminates the need to collect the same data over and over again. Moreover, the actively engaged participants assure that new questions of interest can be continually added – making iConquerMS™ a living Big Data resource.”
Learn more about the iConquerMS™ initiative - sign up for an introductory webinar taking place on Wednesday, January 28, 2015 at 2:30 PM EST. This webinar will be recorded for those who register but are unable to attend.
iConquerMS™ will be hosting additional webinars in the coming months. Stay tuned!
How well do people around you understand MS?