Patients' voices play an important role in the iConquerMS network. (Video provided by iConquerMS)
Date:
July 19, 2016
Topics:
Multiple sclerosis (MS) is a widespread, disabling neurological condition. In fact, it’s the most common disabling condition among adults between 20 and 40 years old. The World Health Organization estimates that MS affects more than 400,000 people in the United States, and nearly 200 are diagnosed with MS each week. People with MS can develop a wide variety of symptoms, including vision loss, fatigue, pain, and loss of coordination.
Unfortunately, clinicians have a hard time predicting which patients will experience mild symptoms and which will see their health deteriorate dramatically, or who will benefit from which of the more than a dozen drugs currently available. To help answer those questions, MS patients can get involved in patient-centered clinical research projects. PCORI has funded a dozen projects about MS or research methods that may be applied to MS studies (see box, PCORI’s Multiple Sclerosis Focus), and just announced $19.6 million in funding for four comparative clinical effectiveness research (CER) studies assessing various therapies for multiple sclerosis.
One project already under way is the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), also called iConquerMS. This network serves as a bridge between people who have MS and researchers, helping patients ensure that research addresses their most pressing questions in order to improve care and outcomes. The network is part of PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
iConquerMS is committed to engaging patients as partners with researchers; this commitment is emblematic of PCORI’s overall approach to CER. To find out more about the network, PCORI spoke with Robert McBurney, BSc, PhD, co-principal investigator of iConquerMS and president and CEO of the Accelerated Cure Project, and Laura Kolaczkowski, the iConquerMS patient co-principal investigator.
PCORI's Multiple Sclerosis Focus
PCORI has funded a dozen patient-centered comparative clinical effectiveness research studies and methods projects that directly or indirectly address multiple sclerosis. This funding includes nearly $20 million for four new studies on therapies for MS.
Two of those studies will compare the pros and cons of drugs to reduce MS attacks or slow the disease's progression. A third will evaluate medications used to treat fatigue, a common problem for people with MS. The fourth will assess whether patients with MS in rural and low-income areas benefit as much from rehabilitation therapies provided via telehealth as they do from treatment in a clinic.
Previously awarded projects include a pilot study that developed and tested a digital tool that can display health information for use by patients with MS and clinicians. (Read more about this project in Tablet Tool Harnesses Data from Many Patients for Individual Choices.)
For more information, see a list of projects, recently approved or in progress, focused on either MS or research methods that may be applied to MS studies.
How did you get involved with iConquerMS?
Laura Kolaczkowski: I was diagnosed with MS in 2008 when I was 54, but looking back, I see I was experiencing symptoms of MS for probably 15 to 20 years before that. I was good at ignoring the symptoms, thinking I was just fatigued or experiencing balance issues because I was doing too much. I was finally diagnosed after telling my doctor about having a numb leg.
I can tell you exactly where I was standing when I got the phone call with my MS diagnosis. I was upset. I wanted to do everything I could to improve my odds. It sent me on a search for answers.
I started looking for information about the disease by connecting with others in the MS community online. Being an informed patient was important in my own care. Then I started thinking about how all this information sharing was causing a shift in how other people communicate with their own care providers. This sparked my interest in MS research and I became active with PCORI.
I became involved with Accelerated Cure Project’s research as a study subject, and when I heard they were applying for PCORnet funding, I offered to help provide the patient perspective.
Robert McBurney: My organization’s mission is to accelerate research in MS, essentially by being like the open source movement in software. What researchers needed were resources that could be accessed by the entire research community in a facile way and inexpensively. Accelerated Cure Project built a biorepository with patient samples such as blood and DNA, along with a lot of data contributed by people with MS and others.
When the call went out from PCORI for awards to create a patient network, the concept of patient-powered research really resonated with our organization. PCORnet is the logical extension of our clinic-based sample and data collection. iConquerMS allows us to collect very large amounts of information about people with MS who join—not only their health data but their ideas for research. Right now, we have about 3,000 registered participants. We’re creating this patient network to transform the way that research is conducted.
How does PCORnet’s approach help with MS disease research?
Robert McBurney: We are getting requests to use our network for research quite frequently—we had two last week. Four funded research studies are going on now, and more are pending funding decisions. [With patients’ medical information out there in electronic records, researchers can find out anything and everything about our data except what we as the people living with a chronic disease might think. -- Laura Kolaczkowski]
Our PCORnet network accelerates research because researchers don’t have to build the data infrastructure or collect the baseline data—we already have those. They just need to use our data that are relevant to their question, and they can use our network to efficiently collect additional data.
People with MS tell us they want to know their prognosis, and also what they can do today to affect their health. Then we can reach out to researchers with questions that are most of interest to people with MS. It changes the whole paradigm for conducting research.
Laura Kolaczkowski: With patients’ medical information out there in electronic records, researchers can find out anything and everything about our data except what we as the people living with a chronic disease might think. PCORnet provides the framework to ask that question. That personal puzzle piece is what makes sure the right research questions are propelling MS research.
With patients’ medical information out there in electronic records, researchers can find out anything and everything about our data except what we as the people living with a chronic disease might think. ... That personal puzzle piece is what makes sure the right research questions are propelling MS research.
If you could have any research question answered, what would it be?
Robert McBurney: As a researcher, I have so many questions. It'd be great to get a sense of how many types of MS are out there. There are 13 or 14 drugs, but physicians have very little evidence on how to optimize treatment. We want to get the right treatment option to the right patient at the right time. (See related article, A Multifaceted Disease Requires a Patient-Centered Response.)
Laura Kolaczkowski: I’d like to know what will happen to me tomorrow, and what can give me a chance for a better prognosis. And also, what can we do to improve the lives of people living with MS? We can make progress on answering these questions if people join us at iConquerMS.
The views expressed here are those of the author and not necessarily those of PCORI.
Comments
I , too, am a member of
I , too, am a member of iConquerMS and serve on the research committee there. Subsequently, I was chosen as a result of that work to be a member of PCORnet's Engagement Committee and additionally am a PCORI Ambassador. I am totally convinced that patient powered research is an absolute necessity in this age of electronic information availability. As an MS Certified nurse who is also living with the illness for the past 4 decades, I am committed to educating and empowering people to become active in their health care team and plan and to drive research that is important to them.
Thank you Robert and Laura for sharing.
Dear Cherie, thank you very
Dear Cherie, thank you very much for your kind comments and for sharing your feedback.
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