What Will it Mean When iConquerMS™?
How many times have you said …. If they would just ask me? Or lamented that your questions about MS go unanswered because researchers have not talked to you? I am excited to tell you that this is about to change – and a real opportunity for people living with Multiple Sclerosis to help shape information about our disease is here. Now.
Please take the time to let me share some background with you first and then I’ll tell you how you can get involved. The Accelerated Cure Project (ACP), a non-profit organization based in Boston, was founded by a person living with MS, and has a sole purpose to improve diagnosis, optimize treatment and lead to a cure for Multiple Sclerosis. ACP has undertaken a number of exciting projects to work toward this goal, but none of them match what is about to happen.
Starting now, you and I have a central place to share our healthcare data, through iConquerMS™. We will also be able to submit our own research questions and eventually interact with the scientists who are going to look at our questions and work on the ones that hold promise to explore further.
iConquerMS™is funded by the Patient Centered Outcomes Research Institute (PCORI), which gathers its money from the fee paid by all of us on our private health insurance premiums. This amount is only $1 per year per insured person, but spread across the entire US population, that adds up to some very impressive numbers. Even more impressive is this organization is charged with finding ways to shift to patient centered health care and research. I also participate in other ways with PCORI initiatives, but I’ll save those details for another time.
In keeping with the patient centered approach, the majority of people guiding the development of iConquerMS™ are like you and me – people living with multiple sclerosis. Many of the leaders within iConquerMS™ are names familiar to you from being a part of our MultipleSclerosis.net community, including our MS experts Lisa Emrich, Stephanie Butler, Christie Germans, and Marc Stecker. It is my honor to serve on the Governing Board of iConquerMS™ and assist in the development of this project from the beginning with the funding proposal and then so much more. I have put 100’s of hours of my own time into the development of iConquerMS™ and it gives me immense satisfaction seeing this patient led project succeed.
iConquerMS™ is endorsed by the leading multiple sclerosis organizations in the United States – MSAA, MSF, CanDo MS, and NMSS – and their leaders sit on various committees for the project. MS research facilities and MS clinics are also represented through the presence of doctors and lead research scientists on the various committees. Think about this for a minute – I would wager that iConquerMS™ is the first time all of these key players and organizations have been gathered into one place, a place where you and I as people living with multiple sclerosis are leading the discussion and developing the research. And we are governing the project. This is a giant task, and I am fortunate to be doing this with thought leaders who have clear visions as to where MS research must head if we are going to find a cure.
There is so much more I can tell you about iConquerMS™ , PCORI and my involvement with both, but I want to get on to something more important – let’s talk about you. What can you do to get involved and move forward with meaningful research? Quite simply, you begin when you Join iConquerMS™ . The details of this project, the sponsors, its use and the informed consent information is on the iConquerMS™ website, but let me share a brief overview of what you can expect to find -
iConquerMS™ is an online patient portal – meaning it’s a place where we can register and share our de-identified data. There are several pieces of data we are collecting right now, including basic demographics. You don’t have to tell us your real name, but we want to know if your sex, age range, and those other basic bits of information.
You will be asked to complete a few questionnaires that will look familiar to you – especially the MS Neuro Quality of Life (MSNQoL) survey which most of us do regularly for our doctors. This survey is a standard tool in all types of MS studies and is a critical piece of information even though it might appear to be pretty useless. The information from my own MSNQoL means little except for me and my doctor, but if you have this completed by 20,000 people with MS, it gives a panoramic view of our quality of life. iConquerMS™ needs this type of big data to look for our cure.
Next comes the more complex part of gathering big data – we hear about electronic health records (EHR’s) all the time in discussions and many of us know how to access our medical files online. Medical providers have been prompted/pushed to convert our records into online accessible forms, and paper files rarely exist anymore. Our EHRs contain a wealth of information about our MS, it’s progression, what works for us and what doesn’t. You will be asked if you are willing to share your EHR – it isn’t a requirement to be a part of iConquerMS™ - and guided through the process of doing this online.
Stop and think about BIG DATA - what it will look like when we have the electronic medical records of 20,000 people who live with MS and the information that researchers will be able to glean from this big picture.
The next piece of iConquerMS™ is what I get most excited about – we have an opportunity to suggest research topics. How many times have you wondered about your MS and a particular question comes to mind and you think it would be nice if someone looked into finding an answer? We want your research ideas – one of us might have just the right question that unlocks one of the many mysteries of multiple sclerosis. This section of the portal is under development, but will be available soon. Obviously, researchers won’t be able to look into all of our questions, and there is a Research Committee, where the majority of its members are also people with MS, who will review the questions and recommend which questions should be developed further. But I promise you each and every idea submitted will be looked at closely.
Joining iConquerMS™ is not difficult, but it will take time to enroll and complete the requested information; it is set up so you can start and stop entering data, as your energy permits. We have also made ‘prefer not to answer’ available at most places in the portal – you only participate and share what you are comfortable with. The sooner we sign up up and submit information, the sooner we can combine it with data from others to create our own MS big data.
We recognize we are asking a lot from everyone to make this giant step to participate by sharing your health data, and investing your time in helping to build our Big Data picture for research. We also expect great things to come from the efforts of everyone coming together to find a way to cure MS.
Don't stop at just joining - please share this invitation everywhere you write and talk about MS. Over 2.3 million people live with MS and the bigger the data we gather, the clearer the picture will become. I invite you and your friends and colleagues to join me at iConquerMS.org - together we are going to make a difference!
wishing you well,
How do you feel before getting an MRI done?