We believe that the best care and the most beneficial outcomes can only come from practices that are created by patients and professionals working together in partnership. That means you, the person living with MS, are front and center when it comes to discussing your medication, your general care, and your vision for what works best for you in your overall treatment plan. You are the expert in your own experience and our hope is to provide you with unparalleled access to your health data so that you can be well informed. In sharing the data already provided to your healthcare professionals you can be integrated more deeply in the decision-making process for your own care.
Through MSIN, this data is also “de-identified,” meaning your name is removed prior to being shared across our network. The hope is that this sharing of data can create a learning environment where other people living with MS can benefit along with you! The sharing of this data across sites will also help MS care centers learn more about their own performance and outcomes, and highlight areas for improvement.
Multiple sclerosis is different for everyone living with this condition, but if we share outcomes within a learning health community, it is possible that what works for you may also be the best course of treatment for someone else living with MS across the country, or vice versa. Additionally, the learning community intends to make it possible to provide more types of support to each other.
Our Learning Health Network
A Patient-Driven, Collaborative Focus
MSIN takes a two-layer clinical research design approach:
Layer 1: Development of the Learning Health Network
A learning health network is defined as:
A multi-center learning community in which learning healthcare system principles are applied to inform and improve care simultaneously.
A learning health network gathers knowledge, shares it, and uses it to improve care and embed best practices into daily care. A learning health network also measures and improves individual and population health.
When you decide with your healthcare professional (HCP) to join MSIN, you will register and complete an informed consent that allows you to share your health information with MSIN to build the learning health network. Once your information is translated into the learning health network, it will be de-identified.
Layer 2: Implementation Research
In this part of the study, researchers and collaborators will use the combined, de-identified information from all the members of MSIN to conduct implementation research studies and test new interventions designed to improve care and outcomes for people with MS.
Our project is advised by two advisory boards – one of which is comprised of people living with MS and their care partners, since these are the true experts in understanding MS. The other is comprised of healthcare professionals, research scientists, and advocacy partners.
These two groups advise the MSIN Steering and Oversight Committee, which is the decision-making board overseeing MSIN. This group will include six leaders, each of which has one vote in major decisions and policy-making for MSIN, as follows: (1) the MSAA leader on the MSIN initiative (study Co-PI); (2) the study PI (Principal Investigator) on the MSIN initiative; (3) two individuals with MS; and (4) two key community stakeholders.
With the strategic leadership of the Multiple Sclerosis Association of America we can ensure that each of us at MSIN has a connection to the MS community (some of us living with MS ourselves) and that we are connecting this experience with the best research and improvement approaches. This means we are well-rooted in the importance as well as the sensitivity of the data and we are focused on using that information to improve care and outcomes for you.