A nationwide initiative to empower people with MS to share their health data will give scientists a ‘Big Data’ view of the disease and accelerate research.
Patients no longer have to sit back and wait for scientists to decide what matters when it comes to multiple sclerosis (MS) research.
The Accelerated Cure Project for Multiple Sclerosis (ACP) recently announced the launch of a new patient-driven initiative to collect health data from people with MS in an effort to fuel new research.
Through an online portal, iConquerMS puts patients in the driver’s seat. Patients share their medical records to paint the “big picture” of the disease for researchers.
More than 800 people with MS have already signed up, even before the initial launch. Thanks to social media, the database is growing.
iConquerMS lets patients share their health records, take part in surveys, and suggest topics for MS research.
All of the information compiled in the database is then available to MS researchers around the world. The project allows patients to play an active role in the effort to understand the disease and one day find a cure.
A decade ago, patients and researchers collaborating to study MS wouldn’t have been possible. But the internet has become the medium for a powerful partnership.
Patients are now considered key stakeholders in the research process. Fresh ideas from a patient perspective are fast becoming the driving force behind new research.
“The appeal and strength of patient-powered research is the community gets to shape the future vision,” said Laura Kolaczkowski, lead patient representative for the iConquerMS initiative, in an interview with Healthline. “The people who join iConquerMS are encouraged to be part of this process of growing our network, sharing the objectives with others who will listen, and submitting their ideas of what researchers should be investigating. Over 50 percent of the participants in all of the governing board and committees are people who know MS well because they live with it, and these are the people who will govern all of the future activities of iConquerMS.”
Art Mellor, a high-tech entrepreneur who was diagnosed with MS in 2000, and his neurologist, Dr. Tim Vartanian, formed ACP in 2001.
The initial funding for iConquerMS comes from the Patient-Centered Outcomes Research Institute, a non-profit organization authorized by Congress in 2010. The organization also partners with Arizona State University and Feinstein Kean Healthcare.
The iConquerMS portal is an easy-to-use, accessible interface that lets members take surveys to measure demographics, quality of life, and overall health. Users can search a database of insurance providers in order to connect their iConquerMS account with their electronic health record (EHR).
EHRs are of particular importance because they not only document a person’s MS history, but they also contain clues to other seemingly unrelated aspects of their health. With members sharing their EHRs with researchers, it’s possible connections may be uncovered about MS that were never considered before.
“We are interested in all health data,” Robert McBurney, Ph.D., chief executive officer of the Accelerated Cure Project for MS and principal investigator for the iConquerMS initiative, told Healthline. “The value of so-called ‘Big Data’ is that it allows you both to test your hypothesis and to form new hypotheses. Since we don’t yet understand the etiology or progression of MS as a disease, all kinds of data may be helpful for our analyses.”
“I believe this kind of initiative can change MS studies in several ways,” McBurney added. “First and foremost, it provides a platform for letting the patient community tell the research community what questions they want answered. Honestly, there has never been a system or a platform for that type of ‘what matters to me as a patient’ communication.”
EHR data is just the beginning for the iConquerMS database.
“We plan over time to add other types of data,” said McBurney, “such as genomic data and imaging data, to the data that patients contribute, thereby enriching it even further.”