Your data. Your power.

When I first saw iConquerMS on the internet, I reacted with cynicism.  I’d lived with Multiple Sclerosis (MS) over twenty-five years.  More than one group had come out with empty promises during that time.  But months later they invited me to join the research committee. I almost deleted the email.  But, instead, out of boredom and curiosity, I asked questions. The answers convinced me.  IConquerMS offered a promising approach to research on MS. 

This group started with a grant from the Patient Centered Outcomes Research Institute (PCORI).  PCORI funds groups that collect “big data” on the internet from people with many chronic diseases.  They use this data in research, but they also learn about the questions patients want answered.  Its goal is to use data from many patients to answer the research questions patients have.  As a final boon, they insist that people with these chronic diseases serve on the boards and committees that decide how researchers use the data. 

IConquerMS is the PCORI group for MS.  They collect data on the iConquerMS website and use it in projects chosen with advice from people with MS, like me.

IConquerMS is now in its fourth year.  These early years were filled with website construction, participant recruitment and grant writing.  They also collected the research ideas of the people with MS from their site.  The research committee now has a large collection of questions, categorized and ranked. 

Concerns about risk factors top the list.  Next, are questions about how to manage symptoms.  Diet is third, reproductive health, fourth and fifth is the effect of the different disease modifying medications.  Smaller numbers reflect other interests, including prognosis, alternative treatments, exercise, cognition and the value and use of supplements.  

The iConquerMS research committee looks at requests to use this data. Before it can be used, the research committee has to approve studies.  Studies that address the question that rank high for people with MS will get priority.  Staff from iConquerMS will also try to match grants to these questions and will attempt to interest scientists in the things that most concern people with MS.

This data, your data, is a treasure trove for researchers and it is accumulating.  The more people with MS who sign onto the website and fill out iConquerMS questionnaires, the greater their influence on research. 

Do you want to help set these priorities?  Join this project.  Sign up today.  It will take a little time to fill out the questionnaires, but it’s time well spent. The more people who join, the more valuable the data base becomes.  The bigger the data base, the more it will interest researchers and the more they will address our questions.  It is well worth your time, so sign up now.

Read more about PCORI http://www.pcori.org/research-results/2015/multiple-sclerosis-patient-powered-research-network-iconquerms™