1. Epidemiology of Health Care Using Administrative Data To gain understanding re: Health of populations and Use of Health Services

2. Purpose of Course Primer in how/why to use Manitoba’s natural research resource Gain insights which come from a population focus Understand broader determinants of health

3. Examples of Administrative Data?? What exactly are we talking about??

4. Research Approach Research driven by insights and opportunities rather than hypotheses and preformed research agendas

5. Administrative Data Advantages Able to study entire population Longitudinal follow-up easy Pre and Post Event Histories Easy Avoids the selection and recall biases Relatively low cost Can study rare outcomes

6. Limitations Data not collected to answer your research questions Quality of data – needs validation and decision-making Individual initiates contact Amount of data – overwhelming Access to data – varies

7. Where to find Population- Based Administration Data 1. Several Canadian provinces 2. Rochester (Minnesota) Epidemiology Project 3. Oxford Record Linkage Study 4. Scottish Record Linkage System 5. Western Australia Health Services Research Linked Database Project

8. The Manitoba Centre for Health Policy –University of Manitoba, Faculty of Medicine, Department of Community Health Sciences since 1991 –Five-year contracts with Manitoba Health, 6 deliverables a year mutually negotiated, all publicly available –External funding of researchers (e.g. CPHI funding) –Mission: To provide accurate and timely information to health care decision-makers, analysts and providers, so they in turn can offer services which are effective and efficient in improving the health of Manitobans The Manitoba Centre for Health Policy (MCHP): Who we are

9. Research Registry Medical Vital Statistics Home Care Nursing Home Hospital Provider Pharmaceutical Immunization Monitoring The Manitoba Population Health Research Data Repository 1 A similar version of this figure appeared in Roos, Menec, and Currie 2004. Inflammatory Bowel Disease Database Sleep Lab Clinical Data Alcoholism Panel Surveys Cancer Registry Educational and Social Data Heart Health Survey Aging in Manitoba Study National Population Health Survey

10. Canada Foundation for Innovation and Manitoba Government funded Data Laboratory Highest standards of security, privacy & confidentiality of data No names, no addresses Probabilistic linkages across files as needed Data for research not for administrative use Provincial privacy offices kept fully informed Respect for Privacy In Building Database

11. Incrementally Added – Gained Experience with Data Files: 1970’s: Hospital and medical files 1980: Nursing home file 1981: Vital Statistics file 1990: Census file 1991: Mental Health Information System 1992: Physician Registry file 1993: Nursing home drugs 1994: Immunization histories 1995: Pharmaceutical file 1996: Ability to cost hospital stays; Manitoba Cost List 1997: Pilot with Social Assistance file 1999: Linked National Population Health Survey 2000: Home Care file 2002: Family Services, Education, Healthy Child

12.  Education (Grades, Tests, Enrollment Data)  Income Assistance  Children in Care  Provincial Programs (Healthy Baby, Baby First)  Genetic Screening  Community Resources New Population Data Sets Added to the Repository:

14. Research Registry Accurately defines coverage status for individuals since 1970 Can help distinguish between "well" individuals from those who left province or died Place of residence (merge to census data) Cohort identification Family identification Case controls / comparison groups

15. Validating the Registry Comparisons made with 1986, 1991, 1996, 2001 census years by date of census. Registry populations are larger by 2-4% overall. Difference is greater for early census years and getting smaller. Female registry population not as much difference as males. Age 25-34 registry population is much higher 4-6% with males being higher than females.

16. Web-based knowledge tools: Data Dictionaries: Restricted to MCHP staff A comprehensive list of field names and contents for the administrative data files housed in the Repository

17. Medical/Research Definitions Glossary Research Protocol Research Resources Project Web Pages Concept Dictionary

18. Web-based knowledge tools: Concept Dictionary: Provides details on how to measure/calculate/define/validate “something” such as a variable or indicator

19. Concept Dictionary Calculates event rates per 1000, adjusting for key population differences (e.g. age, sex) Suitable for comparisons across time and space SAS Macros: RATES

20. Western Australia Data Linkage System –In 2005, Minister for Science declared it a national centre of excellence in Australia –Since 1995, more than 350 major health projects primarily in the area of health care –Between 1995 and 2004, out-of-state revenue from research grants was $58.4 million (Australian) –Child and youth topics (recent reports): Temporal variation in rates and causes of infant mortality among aboriginal and non-aboriginal Health/ outcomes among children of mothers who have schizophrenia and/or other affective disorders

21. Massachusetts Pregnancy to Early Life Longitudinal (PELL) Project Boston University School of Public Health Birth Certificate Hospital Discharge (HD) Mothers Birth Fetal Death Hospital Discharge (HD) Child’s Birth (Core Linkage)

22. Maternal or Child Linked Longitudinal Capacity Program Participation Data 1999, 2000, … Program Participation Data, PNC Usage (1998, 1999) Subsequent Records Child’s Hospital Discharges, Observational Stay, ER Usage Mother’s Hospital Discharges, Observational Stays, ER Usage 1999 Prior Information Mother’s Pregnancy Hospital Discharges, Observational Stays, Emergency Room Usage 1998, 1999 Birth Certificate Hospital Discharge (HD) Mother’s Birth Fetal Death Hospital Discharge (HD) Child’s Birth (Core, 1999) Subsequent Records Child’s Hospital Discharges, Observational Stay, ER Usage Mother’s Hospital Discharges, Observational Stays, ER Usage 2000

23. Alberta Analysis of population registry and vital statistics Analysis of hospital discharge data Analysis of physician claims Analysis of laboratory data Analysis of drug data Risk adjustment Defining socio-demographic variables at small geographic areas

24. H H Utilization Regional population - SES - Health Physicians Personal Care Homes Hospitals PCH A Tool for Population-Based Analyses

25. Principals for Population Focus 1. describe: - supply - access to care - intensity of use - differential use across areas 2. juxtapose indicators of: -socioeconomic risk - use - health

26. Turning Data into Concepts Counting – objects – events Measurement – concepts Examples: # times patient admitted to hospital # times patient admitted with MI health/status severity of illness # admissions to a given hospital # admissions for acute MI to a given hospital case-mix of a given hospital

27. Examples of Concepts Individual: health status Family: poverty, mobility Community: neighbourhood level SES; Health care: continuity of care; hospital case mix Graduation, grade retention

28. Radiology Services Review Province-wide coronary angiography, adult MRI, BMD and screening mammography data are captured For all other modalities, data are incomplete (esp. outside Brandon and Winnipeg ) Some Things Administrative Data Cannot Do

29. Data Rich Environment Provides Insights Re: Who has access to services Who is and who is not in system Those who are healthy and those who are not