In celebration of iConquerMS’s 10th anniversary, we are excited to launch a series of articles that will dive into the heart of this pioneering initiative, starting with a look back at its rich history. Over the past decade, iConquerMS has emerged as a vital link between the MS community and groundbreaking research efforts, fostering an environment where patient voices are not just heard but are instrumental in shaping the future of MS research and treatment. This first article will trace the journey of iConquerMS from its early days, exploring how it has evolved to become a beacon of hope and innovation, bridging the gap among patients, researchers, and healthcare professionals. Join us as we celebrate this significant milestone and the remarkable iConquerMS community!
As part of the Patient Protection and Affordable Care Act of 2010, the U.S. Congress created the Patient-Centered Outcomes Research Institute (PCORI). This independent, non-profit organization was founded on the premise that patients, their families, and clinicians should have reliable information to decide which treatment or other care option is best for them. PCORI’s mission is to enable research that is informed by the people who are most affected by the results – patients, caregivers and others in the broader healthcare community.
What is “patient-centered outcomes research” and why does it matter?
PCORI defines patient-centered outcomes research as “research that helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options.” It is research that identifies the interventions that lead to the best and most relevant outcomes, as defined by people affected by the disease. It elevates the importance of the opinions of patients and puts them on a par with the opinions of researchers and policy makers.
PCORI provided funding for PCORnet, the National Patient-Centered Clinical Research Network, to simplify and speed up patient-centered research. It combines a wide range of health data, research knowledge and patient perspectives, making them easily accessible. PCORnet ensures that health systems, doctors and patients who contribute data are included in every stage of managing and using the data. This approach helps move research from being led by researchers to being centered around patients.
In 2013, ACP received a funding award from PCORI to create the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), which was one of the 29 founding health data networks that formed PCORnet. One year later, the launch of iConquerMS marked a significant step forward. This initiative, born from a partnership between ACP, the School of Complex Adaptive Systems at Arizona State University and Feinstein Kean Healthcare (now part of Ogilvy), is aimed at elevating the treatment, care and quality of life for those affected by MS. iConquerMS connects all stakeholders in MS research, fostering collaboration that accelerates medical breakthroughs and the use of new discoveries.
Governed by people with MS, iConquerMS has engaged 8,500 participants so far. Through an accessible online portal, it empowers them to actively contribute to research by suggesting potential areas of research interest, taking surveys, sharing medical records, and providing biological samples. This portal also provides updates on research and recent discoveries, underscoring the initiative’s focus on empowering participants to actively contribute to advancing MS research.
In 2016, iConquerMS launched the REAL MS initiative (Research Engagement About Life with Multiple Sclerosis) a long-term study tracking the experiences of its participants. Every six months, REAL MS participants update their information on treatments, symptoms, and any MS relapses. These data, combined with information from thousands of others in the iConquerMS network, allow researchers to identify patterns and insights that help understand MS causes, predict treatment outcomes, and develop better treatments. Through iConquerMS researchers are also able to gather additional data, collect biological samples, and recruit individuals with certain characteristics for their studies.
REAL MS is inspired by the Framingham Heart Study, a long-term research project that significantly advanced our understanding of heart disease causes, treatment, and prevention. REAL MS focuses on identifying individual characteristics and outside factors that, together with genetic background, might impact health. iConquerMS also enables the identification of signs of MS at the molecular level by studying genes and other biological markers.
ACP’s dedication to inclusive engagement is evident through initiatives like the MS Minority Research Engagement Partnership Network (MREPN) and the Research Inclusion Diversity and Equity (RIDE) Council. Also established in 2016, MREPN is a collaborative network focused on removing obstacles that prevent diverse groups from participating in MS research, involving partners from minority communities, industry, educational institutions, and healthcare. The RIDE Council, made up of about 30 members with MS from traditionally underrepresented communities, uses their unique experiences to improve research diversity. These initiatives work together to offer guidance and collaborative strategies aimed at increasing the inclusivity, diversity and fairness of MS research activities.
In general, people from minority communities are underrepresented in MS research. This means that its findings may not apply to all. To guarantee that new findings benefit everyone with MS, it’s crucial that research studies mirror the diversity of the MS community itself.
In 2022, iConquerMS Kids & Teens was founded to address the unique needs of children and teens with MS. Increasing pediatric participation in iConquerMS will allow investigators to conduct studies to address the unique needs, interests, and priorities of this previously overlooked age group. Data about their daily experiences, symptoms and clinical treatment will help to create a key resource for research. Insight from youth with MS and their families regarding research topics they deem important will help to bridge the gap between the MS and research communities.
Not much information is available on the long-term impact of pediatric MS, and the safety and effectiveness of its treatments in a younger population.
In 2023, iConquerMS expanded its network to include caregivers to people with MS. iConquerMS Caregivers gives individuals in this role the opportunity to participate in the design and conduct of research by sharing ideas about research topics that they care about, contributing health information to the pool of data that researchers use as a resource, and discovering research opportunities to enroll in. iConquerMS Caregivers integrates the caregiver perspective into research on two dimensions – both as an observer and partner to the person living with MS (providing valuable input on their partner’s status throughout the research process), and as a person with their own needs and priorities (facilitating research that’s focused on caregiver wellbeing).
“iConquerMS Caregivers offers the opportunity to share knowledge and learn best practices for meeting the everyday and long-term challenges of being a caregiver for someone with MS without losing yourself in the process.” – Jon Strum
ACP’s work is driven by the priorities and needs of individuals affected by MS. Our approach is rooted in the belief that the voices of those diagnosed with the disease, along with their caregivers, must play a pivotal role throughout the research process. This includes shaping research questions, influencing study designs, selecting measures of success, and guiding the dissemination of findings for maximum impact. iConquerMS is the only people-powered research network in MS. This powerful initiative brings together and enables people with MS, their care partners, researchers, healthcare providers and others to work together to help drive MS research forward.
“To me, the collaborative nature of our work is most exciting… A complex disease like MS is unlikely to be cured in a fragmented research environment. There is a tremendous need for collaboration in order to accelerate MS research toward better ways to diagnose, treat, and eventually cure the disease.” – Sara Loud
Would you like to learn more about the research that is conducted through iConquerMS? Stay tuned as our iConquerMS 10th anniversary series continues in May!
