1. 9/20091 EPI 5240: Introduction to Epidemiology Sources of Information; Disease Registries September 21, 2009 Dr. N. Birkett, Department of Epidemiology & Community Medicine, University of Ottawa

2. 9/20092 Session Overview Overview sources of information about mortality/morbidity in Canada. Review design of disease registries Provide examples of registries in Canada.

3. 9/20093 Sources of data: Mortality (1) Vital Statistics Births, deaths, marriages, etc. Mostly reported by physicians. Coded centrally by staff trained to apply ICD, etc. coding. Accuracy of information depends on initial effort by person completing the form Multiple causes of death coding. Timeliness of reports is getting better –1999 used to be the most recent information published with 2004 for summary mortality data on-line (CANSIM). –Now can get data up to about 2007.

4. 9/20094 Sources of data: Mortality (2) Canadian Mortality Data-base Information from all Canadian death certificates from 1950 to present. Death certificates (and birth certificates) used to be publicly available but are not now. CMDB can be searched electronically (for a fee) to link subjects to mortality records –‘GIRLS’ Completeness is very good; mainly misses out- of-country deaths.

5. 9/20095 Sources of data: Morbidity (1) Much harder to get information and much less complete (e.g. many diseases/conditions have no routinely available information) Good information on –Many infectious diseases –Cancer –Abuse and violence Some information, but lower quality, on: –Congenital abnormalities –Vision problems –Diabetes Surprisingly poor information on CHD incident cases.

6. 9/20096 Sources of data: Morbidity (2) Potential sources of information –Disease registries –Surveillance –Reportable diseases –Administrative data CIHI ICES Saskatchewan Drug Programme ADRs –General population surveys –Special targeted surveys

7. 9/20097 Sources of data: Morbidity (3) Disease surveillance The PHAC runs a large number of surveillance programmes. –Influenza (fluwatch)(fluwatch) –HIV –Injuries –West Nile disease Extends to chronic diseases as well.

8. 9/20098 Sources of data: Morbidity (4) Disease surveillance Potential Biases –Incomplete coverage –Method of disease identification Self report self diagnosis Lack of confirmatory tests –Popularity effects H1N1 Child abuse Can pick up epidemics but does not give valid incidence rates –‘start’ of an epidemic can enhance reporting leading to artefacts in size of epidemic Sentinel Practices Provincial health labs Ontario Agency for Health Protection and Promotion

9. 9/20099 Sources of data: Morbidity (5) Disease surveillance Reportable Diseases –Another way to conduct surveillance –‘active’ MD’s must report (by law) any diagnosis of these conditions –Applies mainly to infectious diseases –Also applies to suspected child abuse. Gun shot victims in hospitals (Ontario) Many professional duties –E.g. drug abuse in MD’s.

10. 9/200910 Sources of data: Morbidity (5) CIHI (Canadian Institute for Health Information) An independent, not-for-profit organization that provides essential data and analysis on Canada’s health system and the health of Canadians URL: http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=home_e http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=home_e Manages multiple data bases –Health Human Resources –Health Spending –Health Services Multiple sources of information including hospital discharges.

11. 9/200911 Sources of data: Morbidity (6) CIHI (cntd) Sample databases: –Canadian Medication Incident Reporting and Prevention System –Continuing Care Reporting System –Discharge Abstract Database –Home Care Reporting System –Hospital Mental Health Database –Hospital Morbidity Database –National Ambulatory Care Reporting System –Therapeutic Abortions Database –National Health Expenditures Database –National Prescription Drug Utilization Information System Largely based on discharge diagnoses and information

12. 9/200912 Sources of data: Morbidity (7) CIHI (cntd) Sample registries: –Canadian Joint Replacement Registry –Canadian Organ Replacement Registry Linked to kidney registry –National Trauma Registry –Ontario Trauma Registry

13. 9/200913 Sources of data: Morbidity (8) Clinical Data: OHIP, etc. Contains information included in CIHI but also information on clinical encounters outside hospital ICES – Institute for Clinical Evaluative Services –Funded by Ontario government –Aim is to improve delivery of health care Ontario residents. –Can collaborate with outside groups but strong security restrictions on access to data.

14. 9/200914 Sources of data: Morbidity (9) Surveys Can be targeted at specific conditions (e.g.. Canadian Hypertension Survey) or more general (e.g. National Population Health Survey) Most recent surveys in Canada have based on self-reported data –Inaccurate/incomplete diagnoses –Focus on risk behaviours and psychosocial factors

15. 9/200915 Sources of data: Morbidity (10) Surveys Nutrition Canada Survey (1970-72) Canada Health Survey (1978) Canadian Heart Health Survey (1988-92) Canadian Study on Health and Aging (1992) NPHS (1994, 1996/6 & 1998/9) –Includes a cohort follow-up component

16. 9/200916 Sources of data: Morbidity (11) Surveys Canadian Community Health Survey –Started in 2000 Health determinants Health status Health services utilization –2 year cycle 130,000 subjects in year 1 of cycle 35,000 subjects in year 2 of cycle –No physical measures

17. 9/200917 Sources of data: Morbidity (12) Surveys Canadian Health Measures Survey –N=5,000 –Physical measures Anthropometry Cardio fitness Musculoskeletal fitness Physical Activity Spirometry Oral Health –Blood and urine sample –‘in the field’: 2006-8

18. 9/200918 Sources of data: morbidity (13) Surveys Canadian Cohort Studies –A number of large-scale cohorts are just getting started. –Cancer –CHD –Healthy Aging –Childhood development

19. 9/200919 Registries (1) A list or database of people with a pre-defined condition or illness –Ideally, will include ALL people with the condition –Often, will only contain a sub-set. Population-based vs. clinic/hospital/etc. based –‘Population-based’ defines a target population and registers all cases arising from that population –Instead, register all cases treated at a hospital/clinic. OR ask for volunteers with a disease Most useful for looking at prognosis

20. 9/200920 Registries (2) Some Methodology Issues Definition of disease state. –Classification ‘rules’. What to do when the ‘rules’ change? –Need for standard diagnostic criteria/tests –Validity of diagnosis False positives False negatives. –Example: Cancer Malignant vs. benign vs. in-situ Are some cancers excluded –non-melanoma skin cancer Primary vs. metastatic disease First vs. second (and later) cancers

21. 9/200921 Registries (3) Some Methodology Issues (cntd) Completeness of capture –Applies more to population based registries Representativeness of registered subjects –Applies more to non-population based registries Methods of capturing information required on each subject. –MD information Ethical issues; response rate –Patient contact Response rate; validity (and knowledge) of information –Charts, lab reports, etc.

22. 9/200922 Registries (4) Subject Identification Passive vs. active vs. Other. Passive –Subjects identified using existing records with no active reporting by MD, patient, etc. Active –MD required to report any one with the diagnosis HIV, reportable diseases Other –Volunteers –Members of patient support groups CNIB Canadian Diabetes Association

23. 9/200923 Registries (5) What data to collect? Depends on purpose of the registry Subject ID information –Unique identifiers are ‘best’ Not in Canada –Record linkage Demographic information –Age, sex, address, date of birth Diagnostic details –ICD codes –Lab tests Follow-up –Treatments used –Responses and Relapses –Vital Status –Lab tests

24. 9/200924 Registries (6) Uses of Registries Descriptive epidemiology of disease –Incidence/mortality rates by age, sex, etc. –Trends in incidence/mortality Generate etiological hypotheses Prognosis Source of subjects for studies of etiology and prognosis –Ethical/privacy issues

25. 9/200925 Registries (7) Registries: Cancer Under provincial jurisdiction –Mostly, passive identification –Electronic reporting of new cases. –Cancer registration is mandated by law Since 1969, all provinces send data to Statistics Canada for entry in Canadian Cancer Registry. –Data is usually 3-4 years behind. –Hard to get access for outside researchers Fees Need every province to give permission. Can be used for record linkage –Ethical and privacy issues

26. 9/200926 Registries (8) Registries: Congenital Diseases BC has most extensive system (Health Status Registry) –First established in 1952 as voluntary registry of ‘crippled children’ to assist in identifying care needs. –Expanded to include genetic conditions and birth problems like rubella –Now captures cases based on hospital discharge summaries. –Good data since 1984, especially for conditions diagnosed at birth. Alberta has a less extensive registry (age<1)

27. 9/200927 Registries (9) Registries: Cardiovascular Disease No comprehensive CHD registries in Canada Several groups have local registries of specific conditions –Acute MI patients –Pacemakers Hard to identify cases –Clinical disease vs. atherosclerosis –Sudden death –Non-hospital treatment Nova Scotia, Saskatchewan and BC have best information

28. 9/200928 Registries (10) Registries: Renal failure Canadian Renal Failure Registry –Started in 1981. –Voluntary –Appears to have been replaced by a broader based registry collecting cases through hospital discharge summaries: Canadian Organ Replacement Registry –Records information on vital organ transplants and dialysis patients. –Run through CIHI

29. 9/200929 Registries (11) Registries: Miscellaneous Vision –CNIB used to run a voluntary registry of people who were legally blind (started in 1918) –Current status unclear. –Ottawa Eye Institute is currently doing a review of vision-related registries Diabetes Mellitus –Montreal-based registry of IIDM started in 1981 –Canadian Diabetes Association maintains record of members but also includes family and non-patients.

30. 9/200930 Registries (12) Registries: Miscellaneous Hemophillia –Canadian Hemophillia Society maintains list of people with hemophillia Trauma, winter sports injuries, childhood injuries, etc. –Many are based on hospital discharge information from CIHI –Variable quality but can be useful. Very limited information on mental health and conditions like arthritis

31. 9/200931 Summary Good information on mortality and cancer incidence Lack of information for several key health conditions –Heart disease incidence –Most chronic diseases with non-fatal impact (e.g.. arthritis) Reportable diseases help monitor and control infectious diseases