Research Using Linked Health Databases: Canada Update

1. Research Using Linked Health Databases:Canada Update Ministry of Health 8 December 2010

2. Goals of this talk are: • To describe use of linked health databases in NA, esp. BC and Ontario • Illustrate the kinds of use NZ data could be put to and possible models • Discuss appropriate models for linked-data research management in NZ

3. Background • Observational (administrative plus clinical) data becoming more widely used • Mostly to study processes and patterns of care, incl. geographic variations • Comparative clinical effectiveness becoming a more important goal • Especially for pharmaceuticals (Phase IV studies)

4. Background, cont. • Concerns about non-randomisation waning (e.g., increasing use of propensity score) • Measured variables used to develop prediction model for balancing tx and control groups • Models can almost always out-predict doctors

5. Situation in USA • US $1.1 billion comparative effectiveness initiative • Patient-Centered Outcomes Research Institute • Relies almost exclusively on obs. data incl. Registries • Creating ‘registry of registries’ (AHRQ)

6. Situation in USA, cont. • Hampered by fragmentation of system and no national or state health ID numbers, not much linkage going on yet • Medicare (for >=65yo’s) is major option (about 40 million enrollees) • HMOs starting to team up to produce distributed data networks (increases N)

7. Situation in Canada • Canada has been linking health databases since late 80s (in BC) • Most provinces have capacity vested in Univs • BC Linked Health Data Project (LHDP) was managed at UBC until 2009 • Now still based at UBC but managed by academic joint venture • Now called Population Data BC

8. Population Data BC has data from • BC Vital Statistics • Ministry of Health Services (Pharmacare but not Pharmanet) • WorkSafe BC (injury files) • Early Development Instrument Data

9. BC Health Data • Medical Services Plan Payment Information (MSP) – NZ does not have this kind of data • Pharmacare – only all-rx system in Canada • Discharge Abstract Database (Hospital Separations) • Home and Community Care (Continuing Care) • Mental Health • BC Cancer Agency including stage info

10. Research and “Right to Know” “In celebrating the significance of the public’s legal right of access to information, we often overlook the importance of access to information for research purposes. . . . “Population Data BC at the University of British Columbia has built a data base that facilitates valuable research . . .

11. RRK (cont.) “This brief survey demonstrates the benefits of ensuring the availability of information held by public bodies for researchers. As we celebrate Right to Know Week in British Columbia and Canada, we can appreciate the broad range of political, economic, social and cultural benefits that access to information promotes and to remain vigilant to ensure that they continue. “ (OIPC, 13 Sept 2010).

12. Recent Pop Data BC projects • use of antidepressants by expectant mothers and their effects on newborn babies • health costs of treating workplace asbestos-induced illnesses • educational and social benefits of full-day kindergarten • social and economic benefits of reducing early childhood vulnerability

13. Getting value out of ICES: Linked data network for Research, Policy Evaluation and Decision Support David Henry, MBChB, MRCP, FRCP CEO

14. Long term investment by MOHLTC MOHLTC has supported Institute for Clinical Evaluative Sciences (ICES) since 1992. (www.ices.on.ca) We use large linked health data-sets (that go back to 1990) to: Measure usage, appropriateness and outcomes of health care interventions Provide sophisticated decision support for key Ontario healthcare organizations Study the social economic and environmental determinants of health Perform ‘arm’s length’ evaluations of health policies Conduct pragmatic trials and other intervention studies Our interest is in supporting MOHLTC in getting more value from these data

15. The History of ICES Established in 1992 as an independent non-profit corporation with a Board of Directors Prescribed entity under Ontario privacy legislation (PHIPA) Holds and links (most) important health data-sets in Ontario (13.07 m) Collaborate with multiple partners: Ministry, LHINs, CCO, CCN, OAHPP, OHQC, CIHI, etc. Core funding from MOHLTC since 1992 – about 1/3 of total funds: supports infrastructure: high fixed costs to maintain privacy and security Independent, credible and influential – 120 senior clinical researchers from around Ontario

16. Concept of a health super-repository • A single major repository with high levels of privacy and security, approved by the IPC • Administrative health records, clinical registry, vital statistics, ethno-cultural identifiers, social services, corrections, education, transport data etc – all linked at the level of the individual • High level methodological/ statistical skills: enabling inferences about cause and effect • Linked de-identified data sets available to analysts and researchers in ICES expansion sites across the Province

17. Examples of ICES Research (>300 published reports in 2009) Health system structures Defining the LHIN boundaries Variation in quality metrics by institution/LHIN Impact of alternate payment plans for physicians on access to care Impact of socioeconomic status on access to preventive/ treatment services Effects of built environment on rates of type 2 diabetes Clinical effectiveness Adverse cardiovascular effects of Cox-2 inhibitors Deaths from new opiate medications Comparative effectiveness of drug eluting and bare metal coronary stents Characteristics of tumors missed at colonoscopy Do the rates of appropriate firing of implantable cardiac defibrillators vary according to LV function?

18. Capabilities of ICES: mapping diabetes to aid urban planning and health service delivery

19. ICES • Efficient– highly productive – >1 published article in peer-reviewed journal per week • Privacy issues – Privacy Impact Statements; probability of reID; small cell withholds • Security – high level of keyed security • Expedited ethics approvals with retrospective reviews based on agreed template

20. Table Example

21. ICES – Top Ten Areas of Research 1994-2010

22. HEALTH SYSTEM MEASUREMENT ACCOUNTABILITY AND PLANNING • ICES Practice Atlases:, Edition 1, 1994, and Edition 2, 1996 and the ICES Cardiovascular Atlas. 1999These had profound effects: They set the stage for public reporting and accountability in Ontario. They also identified the decline in length of stay in Ontario, identified the temporal changes in treatment modalities that drove this and recommended appropriate hospital closures and consolidations. This was an important factor in what became the largest hospital restructuring in Canadian history, beginning in 1996.

23. Health system (cont.) • The impact of hospital report cards: The EFFECT Trial : ICES piloted the original work on hospital report cards in Ontario. This led to the program now implemented by the Cardiac Care Network. In 2009 ICES scientists published the world’s first randomized controlled trial of hospital report cards This showed that this form of feedback stimulated some important changes in delivery of care and led to an overall reduction in mortality after heart attack and heart failure

24. HEALTH SYSTEM FUNDING • Alternate Payment Plans for Physicians: This work was the first to show the differential impact of different payments plans for primary care physicians in Ontario. The change to capitation did not result in the anticipated benefits

25. Funding (cont.) • Physician remuneration levels in Ontario: Ongoing work involving ICES scientists and staff in the Ministry will provide the first accurate picture of doctors’ income in Ontario and how this varies by specialty • Effects of improving access to effective care – more liberal access to this cardiovascular drug for patients with cardiac stents significantly reduced the rates of subsequent cardiac events

26. PUBLIC HEALTH • Health of Indigenous Peoples ICES researchers are working with First Nations and Métis to carry out the first comprehensive and contemporary analysis of the health profiles of members of these communities in Ontario • Diabetes Atlases: the mapping of diabetes in Toronto was the first step in a program to use GIS techniques to identify the determinants of rates of diabetes across Ontario municipalities. This groundbreaking work showed the importance of built environment in determining rates of diabetes

27. Public health (cont.) • SARS/influenza : Five policy recommendations from Toronto's SARS outbreak to improve the safety and efficacy of restrictions on hospital admissions to manage infectious disease outbreaks. • Risk factors for cardiovascular disease: Over a series of key papers ICES scientists have documented the varying prevalence of cardiovascular risk factors in key community groups – eg low SES, landed immigrants, the young and poor.

28. APPROPRIATENESS OF CARE Drug Eluting Stents:This was a pivotal study that defined the group of patients with coronary disease who benefit from drug eluting stents and just as important those who do not. This work was used as the basis for the restricted coverage policy currently operating in Ontario. • Unnecessary prenatal ultrasounds This research showed the proliferation of prenatal ultrasound tests including a proliferation of multiple testing, which was most marked in low risk pregnancies

29. Appropriateness (cont.) • Costs of blood glucose test strips to top $500 million in Ontario by 2013: This ICES report highlighted the huge savings that will result from curtailing the excessive use of blood glucose testing strips by individuals with type 2 DM • Eight out of 10 ambulance transfers between Ontario healthcare facilities found to be “routine and non-urgent” This study showed the high level of inappropriateness of use of the Ontario ambulance service. Data show that over a three-year period, inter-facility patient transfers in Ontario increased by 40 percent

30. WAIT TIMES/ EQUITY OF ACCESS • Waiting for coronary artery bypass surgery: population-based study of 8517 consecutive patients in Ontario This was one of the early and key studies of wait times for cardiac procedures that led to the Ontario wait times strategy. • Effects of Socioeconomic Status on Access to Invasive Cardiac Procedures and on Mortality After Acute Myocardial Infarction. This was one of the first studies in Canada to show that availability of cardiac procedures increased with higher socio-economic status

31. Wait Times (cont.) • POWER study: This has shown that access to treatment services varies little by socioeconomic status, but the poor and disadvantaged lag in their capacity to access preventive services • Better access to MRI: but for whom? This recent study shows that access to magnetic resonance imaging has improved over time in Ontario, but the better off sections of the population have benefitted most

32. EVALUATION OF HEALTH TECHNOLOGY • Systematic review of PET scanning in various cancers: This study had a huge influence on the ministry as it formulated its strategy about funding PET, and funding studies of PET, including coverage decisions in Ontario • Implantable Defibrillators: The ICD registry for Ontario is maintained at ICES and has been used to conduct studies into the appropriateness of implantation, rates of firing and the complication rates after implantation. The latter have been substantially higher than reported in clinical trials

33. DRUG SAFETY AND EFFECTIVENESS • Outpatient gatifloxacin therapy and dysglycemia in older adults This is another important clinical study. - the drug was taken off the international market within 3 months of publication of this report. • Rosiglitazone and cardiac events: Several studies at ICES have confirmed that cardiac risks are higher with this drug (Avandia) than with equivalent medications. These were the first studies to estimate risk at a community level

34. Drug Safety (cont.) • Prescribing of opioid analgesics and related mortality before and after the introduction of long-acting oxycodone. This recent work shows a greater than doubling in the incidence of death from opiate drugs following the introduction and widespread marketing of long acting oxycodone. Many of these deaths appear to have been accidental

35. Drug Safety (cont.) • Interaction Study - Clopidogrel/omeprazole: This study showed that the gastric acid-suppressing drug omeprazole antagonizes the therapeutic effects of the anti-thrombotic agent clopidogrel, leading to an increase in risk of heart attacks. The research pointed to safer alternatives. • Interaction Study - Tamoxifen/Paroxetine: This important study showed that paroxetine inactivated the anti-cancer properties of tamoxifen (used in breast cancer) leading to an increased risk of recurrence and death

36. Cancer-related ICES studies from 2008 – present • 1. A population-based study of cardiac morbidity among Hodgkin lymphoma patients with pre-existing heart disease • 2. A population-based study of follow-up care for Hodgkin lymphoma survivors • 3. Adoption of adjuvant chemotherapy for non–small-cell lung cancer: a population-based outcomes study.

37. Cancer-related studies (cont.) • 4. Association between colonoscopy rates and colorectal cancer mortality • 5. End of life care for women with gynecologic cancers • 6. Factors associated with end-of-life health service use in patients dying of cancer • 7. Fracture types and risk factors in men with prostate cancer on androgen deprivation therapy: a matched cohort study of 19,079 men

38. Cancer-related studies (cont.) • 8. Long-term survival in young adults with colorectal cancer: a population-based study • 9. Management of gastric cancer in Ontario • 10. Population-based longitudinal study of follow-up care for breast cancer survivors • 11. Selective serotonin reuptake inhibitors and breast cancer mortality in women receiving tamoxifen: a population based cohort study

39. Cancer-related studies (cont.) • 12. Using more end-of-life homecare services is associated with using fewer acute care services: a population-based cohort study • 13. Why do patients with cancer visit the emergency department near the end of life? • 14. Association of colonoscopy and death from colorectal cancer: a population-based, case–control study

40. Cancer-related studies (cont.) • 15. Effect of lymph node retrieval rates on the utilization of adjuvant chemotherapy in stage II colon cancer • 16. Factors related to second cancer screening practice in disease-free cervical cancer survivors • 17. Longer wait times increase overall mortality in patients with bladder cancer

41. Cancer-related studies (cont.) • 18. Outcomes of surveillance mammography after treatment of primary breast cancer: a population-based case series • 19. Patterns of care in the initial management of women with ovarian cancer in Ontario • 20. Patterns of surgical care for uterine cancers in Ontario

42. Cancer-related studies (cont.) • 21. CT, MRI and ultrasound scanning rates: evaluation of cancer diagnosis, staging and surveillance in Ontario • 22. End-of-life care in lung cancer patients in Ontario: aggressiveness of care in the population and a description of hospital admissions • 23. Patterns of care for radical prostatectomy in the United States from 2003 to 2005

43. Cancer-related studies (cont.) • 24. Racial composition of hospitals: effects on surgery for early-stage non-small-cell lung cancer • 25. Racial segregation and disparities in breast cancer care and mortality • 26. Rates of new or missed colorectal cancer after barium enema and their risk factors: a population-based study

44. Cancer-related studies (cont.) • 27. Risk of proximal and distal colorectal cancer following flexible sigmoidoscopy: a population-based cohort study • 28. Screening mammography for young women treated with supradiaphragmatic radiation for Hodgkin's lymphoma • 29. Surgery for gallbladder cancer: a population-based analysis

45. Cancer-related studies (cont.) • 30. Surgical outcomes in women with ovarian cancer • 31. The impact of diabetes on survival following breast cancer • 32. Treating vulvar cancer in the new millennium: are patients receiving optimal care?

46. The Ontario Drug Policy Research Network: Generating Evidence to Inform Policy Presented by Tara Gomes The Ontario Drug Policy Research Network

47. Conflicting Perspectives of Researchers and Policy-makers

48. Drug Utilization, Costs Policy-driven Projects Adherence Ontario Public Drug Programs (OPDP) Drug Safety Drug Interactions Academic Projects Drug Safety Rapid Response Unit (RRU) Core Academic Unit (CAU) Cost Effectiveness ODPRN Structure

49. Develop new project ideas • Policy contact Investigators • Independent Investigator • Policy contact • Methodologist/Epidemiologist • Support external researchers • Core staff supervisor • General project oversight • Analyst • Extract data and perform analyses Rapid Response Unit (RRU) Analyst(s) Program Leader Project Manager • Track projects and key metrics • Privacy/ethics submission • General Organization/Meetings RRU Structure

50. Five Examples of ODPRN Projects • Policy Driven Projects: • Thiazolidinediones and Adverse Cardiovascular Events • Patterns of Blood Glucose Test Strip Use • Potentially Inappropriate Opioid Analgesic Utilization • Academic Projects • Drug Interaction between PPIs and Clopidogrel • Macrolide-Induced Digoxin Toxicity