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NDSS English Report CV10.Vp Responding to the Challenge of Diabetes in Canada First Report of the National Diabetes Surveillance System (NDSS) 2003 Our mission is to help the people of Canada maintain and improve their health Health Canada For additional copies, please contact: Publications Health Canada Ottawa, Ontario K1A 0K9 Tel: (613) 954-5995 Fax: (613) 941-5366 Available at www.NDSS.ca This publication can be made available in/on computer diskette/ large print/audio cassette/braille, upon request. The opinions expressed in this publication are those of the authors and do not necessarily reflect the views of Health Canada Ce document est aussi publié en français sous le titre : Relever le défi posé par le diabète au Canada Premier rapport du Système national de surveillance du diabète (SNSD), 2003 © Her Majesty the Queen in Right of Canada, represented by the Minister of Health (2003) Cat. N° H39-4/21-2003E ISBN 0-662-35419-2 5602 Responding to the Challenge of Diabetes in Canada First Report of the National Diabetes Surveillance System (NDSS) 2003 i Acknowledgements Many organizations participate in the National GlaxoSmithKline Inc. The full list of participants Diabetes Surveillance System (NDSS) as as well as persons currently involved in NDSS collaborators or partners: provincial/territorial committees are listed in this report or its governments, non-government organizations, appendices. We thank all current and past aboriginal groups, academics/clinicians, the members of NDSS for their contributions. federal government and the pioneering sponsor, Acknowledgements ii Executive Summary Diabetes is a serious and growing public health q a special focus on Aboriginal populations; problem in Canada, particularly in Aboriginal populations. The morbidity and mortality q methods of data capture; associated with diabetes are increased q prevalence and mortality data; and considerably by complications such as heart disease and stroke, blindness, kidney disease, q future plans, including validation of a nerve disease and amputations. diagnostic algorithm for diabetes in people under 20 years of age. To date, there has been a lack of ongoing, systematic, validated Canadian analysis for basic Highlights of NDSS data include the following: prevalence and other diabetes information. The q prevalence of diabetes among adult Canadians National Diabetes Surveillance System (NDSS) is in 1999/2000 was 5.1%; the mechanism developed to provide improved data about diabetes. It is a network of regionally q 1,196,370 adult Canadians were living with distributed diabetes surveillance systems that diagnosed diabetes in 1999/2000; compile administrative health care data relating q Canadian adults with diabetes are twice as to diabetes, and send aggregate anonymous data likely to die prematurely compared with to Health Canada for national analyses. adults without diabetes; and This is the first report comprehensively describing q 41,483 adult Canadians with diabetes died NDSS. It covers: in 1999/2000. q the original concept of using health care NDSS represents the first time that a administrative databases to track disease coordinated, national use of administrative data burden in a population; for public health surveillance purposes has been undertaken. NDSS can measure prevalence, q studies that have demonstrated the incidence and outcomes over time for both the feasibility and validity of the concept; nation as a whole and for specific regions. Also q activities directed towards assessing and for the first time, NDSS can compare health improving provincial/territorial capacity to services use and other health outcomes of people participate in NDSS; with and without diabetes. With these features, q strengths and limitations of the NDSS NDSS is also a prototype of enhanced capacity approach; and infrastructure to support surveillance for other diseases that can be tracked through the q structure and governance; health care system. Executive Summary iii Canada was in a unique position to develop this be used not only for surveillance but also for type of surveillance system, given its publicly examining many policy and research questions. funded health insurance generating person- specific administrative data. NDSS use of multiple Perhaps most importantly, NDSS was the catalyst databases offers information on diabetes that is far for exciting partnerships with various jurisdictions superior to what would be possible using one across Canada cooperating to achieve the shared source alone. The resultant rich source of data can goal of reducing the burden of diabetes. Executive Summary iv Table of Contents Acknowledgements............................... i Executive Summary .............................. ii List of Figures and Tables ........................... vii Acronyms ................................... viii Introduction .................................. 1 The Challenge of Diabetes ........................... 3 Diabetes as a Personal Challenge.......................... 3 Diabetes as a National Challenge .......................... 3 Diabetes as a Particular Challenge for Aboriginal People in Canada .......... 4 National Diabetes Surveillance System (NDSS) – A Response to the Challenge . 5 The Original Concept ............................... 5 Feasibility..................................... 6 The NDSS Model (goals, principles, attributes) ................... 7 Capacity-Building ................................. 7 Strengths and Limitations ............................. 8 Structure and Governance ........................... 10 Steering Committee ................................ 10 Working Groups .................................. 11 Partnerships ................................... 11 Responsibilities .................................. 13 Guidelines .................................... 13 Table of Contents v Focus on Aboriginal Populations ........................ 15 Identifying Aboriginal Data ............................. 15 Basic Principles .................................. 15 Partnerships ................................... 16 Methods of Data Capture ............................ 17 Physicians Claims File ............................... 17 Hospital File ................................... 18 Health Insurance Registry ............................. 18 Data Processing at the Provincial/Territorial Level .................. 19 Data Processing at the National Level........................ 21 Definitions and Calculations ............................ 23 Data Validation .................................. 24 Facts and Figures ............................... 25 Prevalence .................................... 25 Mortality ..................................... 28 Accomplishments, Plans and Possibilities .................... 32 What NDSS Tells Us ............................... 32 What NDSS Does Not Tell Us ........................... 32 What NDSS Will Tell Us in the Near Future ..................... 34 What NDSS May Tell Us in the Long Term ..................... 35 Finding Answers ................................ 37 References .................................. 38 Table of Contents vi Appendices Appendix A: NDSS Capacity Assessment Form .................. 43 Appendix B: Regional Activity .......................... 52 Appendix C: NDSS Steering Committee Membership 2003 ............ 56 Appendix D: NDSS Working Group Membership 2003............... 57 Appendix E: Memorandum of Understanding (MOU) ............... 60 Appendix F: NDSS Guidelines .......................... 66 Appendix G: Comparison of NDSS and Statistics Canada Counts of Death and Population ........................... 74 Appendix H: Annual Person-Level Summary File (APLSF) Data Elements ...... 76 Appendix I: Canadian Standard Population Estimates - July 1, 1991 ....... 77 Appendix J: Validation Work .......................... 78 Appendix K: Age-Specific Prevalence by Fiscal Year, Sex and Province/Territory . 82 Appendix L: Age-Specific Mortality by Fiscal Year, Sex and Province/Territory .... 94 Table of Contents vii List of Figures and Tables Figures Figure 1: NDSS Governance Structure ...................... 10 Figure 2: Comparison of NDSS with Statistics Canada Deaths, April 1995 to March 1999, by Province/Territory ................... 18 Figure 3: Comparison of NDSS with Statistics Canada Population Counts, July 1997/98/99/2000, by Province/Territory.............. 19 Figure 4: Data and Process Flow Diagram .................... 20 Figure 5: Prevalence of Diabetes in Canadians by Fiscal Year and Sex ....... 25 Figure 6: Prevalence of Diabetes in Canada, 1999/2000, by Age and Sex ..... 26 Figure 7: Prevalence of Diabetes in Canada by Province/Territory, 1999/2000 . 28 Figure 8: Canadian Mortality Rates by Fiscal Year, Sex and Diabetes Status .... 29 Figure 9: Canadian mortality Rates by Age and Diabetes Status, 1999/2000.... 30 Figure 10: Comparison of Mortality for Canadians With and Without Diabetes, 1999/2000, by Province/Territory ................... 30 Tables Table 1: Steering Committee Membership.................... 11 Table 2: Working Groups and Areas of Responsibility .............. 12 Table 3: Percentage (%) of Physicians Paid Only on a Fee-For-Service Basis.... 17 Table 4: Contents of the Canadian Aggregate Datafile .............. 22 Table 5: Prevalence of Diabetes in Canada by Fiscal Year, Province/ Territory and Sex ........................... 27 Table 6: Canadian Mortality Rates by Diabetes Status, Fiscal Year, Province/Territory, and Sex ...................... 31 Table 7: NDSS Accomplishments.......................
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