Title Consultation Process to Determine Priority Information Needs for the Canadian Multiple Sclerosis Monitoring System

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1 Title Consultation Process to Determine Priority Information Needs for the Canadian Multiple Sclerosis Monitoring System Subtitle Summary of Feedback From Participating CMSMS Advisory Committee Members and Government Representatives, January 2012

2 Our Vision Better data. Better decisions. Healthier Canadians. Our Mandate To lead the development and maintenance of comprehensive and integrated health information that enables sound policy and effective health system management that improve health and health care. Our Values Respect, Integrity, Collaboration, Excellence, Innovation

3 Table of Contents Acknowledgements... iii Disclaimer... iii Summary... 1 Gathering Feedback... 1 Alignment of Priorities... 2 Next Steps... 2

4

5 Consultation Process to Determine Priority Information Needs for the Canadian Multiple Sclerosis Monitoring System Acknowledgements The Canadian Institute for Health Information wishes to thank the Canadian Multiple Sclerosis Monitoring System Advisory Committee members and federal/provincial/territorial government representatives who provided feedback. The input received was invaluable and forms the basis of this summary. Production of this summary document has been made possible by a financial contribution from the Public Health Agency of Canada. Disclaimer The views expressed herein do not necessarily represent the views of the Public Health Agency of Canada. iii

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7 Consultation Process to Determine Priority Information Needs for the Canadian Multiple Sclerosis Monitoring System Summary Gathering Feedback As part of ongoing stakeholder engagement related to the development of the Canadian Multiple Sclerosis Monitoring System (CMSMS), the Canadian Institute for Health Information (CIHI) undertook a consultation process to identify and validate priority information needs related to multiple sclerosis (MS). CIHI initiated this consultation process by hosting an information needs workshop in Ottawa on September 15, This workshop brought together 29 subject matter experts from across Canada to identify a list of priority clinical- and policy-related questions that would guide CIHI as it develops the CMSMS minimum data set. A copy of the complete proceedings report can be found at The following nine themes were identified: 1. Prevalence and incidence data 2. Treatment options and impacts 3. Effectiveness of different models of care 4. Effectiveness of treatment 5. Factors affecting access to health care (such as diversity and socio-economic status) 6. Outcome measures 7. Effect of MS on employability 8. Functional ability of persons with MS 9. Service delivery timelines (for example, effect on disease progression) The second phase of the consultation process took place in November and December Using a summary of the themes and questions identified at the September workshop, CIHI requested input from two project advisory committees, as well as federal/provincial/territorial governments, to determine how the priority questions identified at the workshop align with their MS-related information needs. 1

8 Consultation Process to Determine Priority Information Needs for the Canadian Multiple Sclerosis Monitoring System Alignment of Priorities Considerable alignment exists among the nine themes identified at the September workshop and the jurisdictions MS-related information priorities identified by federal/provincial/territorial government representatives and non-governmental advisory committee members: Prevalence and incidence of MS was identified as the top priority information need. It was noted that it will be difficult to fulfill this need, given the current voluntary data collection practices in place in Canada regarding patients living with MS. To achieve prevalence and incidence statistics, a broader strategy and dialogue will be required with many other stakeholders, such as the Public Health Agency of Canada. The need for basic sociodemographic and clinical information about the patient population seeking care from MS clinics was highlighted. The second priority was identified as treatment options and impacts. The third priority was identified as factors affecting access to health care. The fourth priority was identified as models of care. The fifth priority was identified as effectiveness of treatment. Next Steps The nine themes identified at the September workshop and the alignment of these themes with jurisdictional priorities will be integral to the development of the minimum data set that will be used for data collection for the CMSMS. 2

9 Production of this report is made possible by financial contributions from Health Canada and provincial and territorial governments. The views expressed herein do not necessarily represent the views of Health Canada or any provincial or territorial government. All rights reserved. The contents of this publication may be reproduced unaltered, in whole or in part and by any means, solely for non-commercial purposes, provided that the Canadian Institute for Health Information is properly and fully acknowledged as the copyright owner. Any reproduction or use of this publication or its contents for any commercial purpose requires the prior written authorization of the Canadian Institute for Health Information. Reproduction or use that suggests endorsement by, or affiliation with, the Canadian Institute for Health Information is prohibited. For permission or information, please contact CIHI: Canadian Institute for Health Information 495 Richmond Road, Suite 600 Ottawa, Ontario K2A 4H6 Phone: Fax: Canadian Institute for Health Information

10 Talk to Us CIHI Ottawa 495 Richmond Road, Suite 600 Ottawa, Ontario K2A 4H6 Phone: CIHI Toronto 4110 Yonge Street, Suite 300 Toronto, Ontario M2P 2B7 Phone: CIHI Montréal 1010 Sherbrooke Street West, Suite 300 Montréal, Quebec H3A 2R7 Phone: CIHI St. John s 140 Water Street, Suite 701 St. John s, Newfoundland and Labrador A1C 6H6 Phone: CIHI Victoria 880 Douglas Street, Suite 600 Victoria, British Columbia V8W 2B7 Phone: At the heart of data

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