iConquerMS™ sounds like a solitary activity, doesn’t it? But imagine if a bunch of us with Multiple Sclerosis got together and from all of us sharing notes on our individual histories we develop new data and ideas that will give researchers a bigger look at MS from our experiences.
Moving data from being a single contributor to collecting the data from many is often called BIG DATA and iConquerMS™ is looking to create some of the biggest data yet on MS. We can’t do this alone – we need each and every one of you to join.
iConquerMS™ is an online patient portal led by the Accelerated Cure Project (ACP), a non-profit organization that has the ultimate goal – to find a cure for MS. ACP received the funding from the Patient-Centered Outcomes Research Institute (PCORI) to develop iConquerMS™. I have been involved with ACP and this project for over a year and can say I have never worked with a more sincere and dedicated group of professionals than their small but mighty staff. They have earned my trust and respect.
Remember the part of PCORI that stands for Patient Centered? I am proud to say that the majority of people on the Governing Board, and the other committees that are overseeing iConquerMS™ and making the critical decisions and choices are just like you and me – people with multiple sclerosis. This project could not be more patient centered than it is already. Patients helped design it, patients run it, and it will be successful because patients will join and contribute their own data.
As people living with Multiple Sclerosis we often complain that we aren’t recognized as experts on the disease. Who else besides us really knows what it is like to live in a body with MS? We have knowledge that others don’t … our own experiences. And now, through iConquerMS™ we can share those experiences and our information and together all of us are poised to make a difference. If you’ve paid attention to the medical news in recent years, patient centered care is part of our health care reform – isn’t it about time you and I are the important ones in our health care?
The idea behind iConquerMS™ is really quite simple -there is a web portal at iconquerms.org where people with MS create an account, complete some basic surveys, share their health records, and propose questions that researchers might study.
I am also happy to tell you that every one of the major MS organizations in the United States have endorsed iConquerMS™, including NMSS, MSAA, MSF and CanDoMS. Not only have they endorsed it, leaders from each of these groups participate on the various committees. They believe in the work of ACP and what iConquerMS™ can do for the future of MS research. There is a lot more information about this project, who is involved and what you can expect on the website and I hope you will take the time to learn more.
This is my brief outline of what you can expect to do when you join me at iConquerMS™:
- Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records
- Enter your demographic data – we really do need to know those basic things about you to help figure out where you fit in the Big Data picture
- Complete some surveys about life with MS –you have probably done these at other times for your doctor but are very important to add to our Big Data
- Share your electronic health records – there are great instructions on how you can do this and you can always contact someone at iConquerMS™ for help if you get stuck on this part
- Submit your questions of what you think researchers should take a closer look at – the research committee, made up of people with MS and key scientists will sort through our questions and make recommendations
- Then share your experiences with iConquerMS™ with everyone you know – to gather really Big Data, we are aiming for 20,000 participants and we need your help to spread the word and recruit others
- Expect to receive updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests
I won’t lie and tell you all of this is easy – because it isn’t. It’s going to take some time to work through all of these bits of information and iConquerMS™ is designed so you can start and stop your entry of data when you need to take a break. But it obviously hasn’t been easy to find a cure for MS either since that hasn’t been done yet – and who knows what one key piece of our collective information might unlock the answer.
Isn’t it worth our time and efforts to try to find the answers? I want to be able to say we conquered MS through iconquerMS™. This is only going to happen when we all join together and I hope you will accept this invitation and register today.