It is a new reporting system that will significantly increase our understanding of the evolution and treatment of MS in Canada, by making more information available to Canadians with MS, clinicians, researchers, policymakers and to all Canadians.
The system will be developed by the Canadian Institute for Health Information (CIHI) in close collaboration with the Canadian Network of MS Clinics and the MS Society of Canada. Federal funding through the Public Health Agency of Canada will support the development of this collaborative initiative. Clinical and technical experts from across Canada, representatives from among those diagnosed with MS, and provincial and territorial governments will provide input into the design and development of the system.
Clinical and demographic information will be collected from Canadians diagnosed with MS on a voluntary basis through their health care practitioner. The Canadian Network of MS Clinics will be the main data suppliers to CIHI. The data will be stored and used according to CIHI’s privacy protection policies and procedures, which are recognized as being among the most robust in Canada. Once sufficient information is collected for analysis purposes, CIHI will begin producing reports that will be made publicly available for those living with MS and for all Canadians. In addition, information will be made available to clinicians to support MS care, as well as to researchers to further understand the progression of the disease and the use of treatments.
The monitoring system helps those diagnosed with MS in several ways:
And finally, the information can also help health system planners identify future needs and plan resources distribution more effectively, to ensure those diagnosed with MS have access to the care they need.
CIHI will develop the monitoring system in 2011-12 so that the system will be fully operational 2012.
The development costs will be $2 million. During the development phase (April 1, 2011 – March 31, 2012), CIHI will complete a precise costing for ongoing operations, and current estimates are $1.5 million annually.
The monitoring system will be able to track Canadians with MS who have chosen to have the Zamboni procedure abroad and monitor MS symptom changes over time and any complications. The CIHR is leading an expert group to review the outcome of 7 scientific studies and based on the outcomes of these studies, the scientific expert working group should reach conclusions regarding (1) the association (or lack thereof) between impaired cerebral venous drainage and MS; and (2) a common standard for reliably diagnosing the condition using imaging or other techniques. The Government will decide whether or not to support clinical trials based on the outcome of these studies. The effectiveness of the Zamboni procedure can only be determined through scientifically rigorous clinical trials.
A few jurisdictions in Canada have developed MS data systems, but there is currently no national, pan-Canadian monitoring system. The CIHI will work with jurisdictions to develop the standardized data collection approach and to build on existing provincial/territorial data systems, where they exist, in order to avoid duplication.
Several other countries operate MS data systems, including Germany, Italy, Denmark, Sweden, and the United States. CIHI and its partners will learn from international experience and adopt best practices as it develops a system for Canada.
The first phase of system development will focus on determining what is in place, what is currently in development, and ensuring that the most efficient means of data capture are put in place. This will ensure standardization in data capture, minimize redundancy and maximize alignment with existing P/T systems.