Measurements for Improved Quality in Healthcare

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Measurements for Improved Quality in Healthcare

This country report concerning Canada is focused on systematic healthcare improvements based on measurements within the healthcare system, including clinical outcomes

indicators and disease registries. The report is part of the Swedish Agency for Growth Policy Analysis’ Health Measurement Project in which quality measurements in healthcare have been studied in a

Canada

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Reg.no. 2013/012

Swedish Agency for Growth Policy Analysis Studentplan 3, SE-831 40 Östersund, Sweden Telephone: +46 (0)10 447 44 00

Fax: +46 (0)10 447 44 01 E-mail: info@growthanalysis.se www.growthanalysis.se

For further information, please contact Martin Wikström Telephone: +46-(0)10-447 447 3

E-mail: martin.wikstrom@growthanalysis.se

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Foreword

This country report is focused on systematic healthcare improvements based on measurements within the healthcare system, including clinical outcome indicators and disease registries, in Canada. It is part of the Swedish Agency for Growth Policy Analysis’ Health Measurement Project in which quality measurements in healthcare have been studied in a number of countries. The Swedish Ministry of Health and Social Affairs commissioned the project.

The report was written by Sofie Björling at Growth Analysis office in Washington DC.

Martin Wikström was the project leader for the multinational study.

Stockholm, April 2013

Enrico Deiaco, Director and Head of Division, Innovation and Global Meeting Places

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Summary

The Canadian healthcare system is composed of several systems, since each province and territory has the responsibility for the delivery and organization of the services in its own jurisdiction. Since the 1990s, when the quality of healthcare was perceived as having deteriorated and especially the wait times for care were considered unacceptable, several initiatives, federal and provincial, have been taken to increase both the quality and access of care. In conjunction with these activities, initiatives on the sharing of information between the jurisdictions and federal organizations were agreed upon and the development of a comprehensive framework for reporting, using comparable indicators, was initiated.

Many databases and registries exist in the country, with the Canadian Institute of Health Information (CIHI) hosting 24 databases and 5 registries, most of them pan-Canadian. The majority of the information is collected using administrative data, such as hospital discharge databases, and in addition to CIHI most jurisdictions, especially the provinces, will collect and analyze the information.

The concern for the quality of the healthcare in the country has resulted in a very large number of organizations, both provincial (the territories have not been active in this area so far) and federal, that report health measurements, including health indicators. In addition, many different types of indicators are used and for different purposes, resulting in a state that by some is called an “indicator chaos”.

Even though a pan-Canadian privacy law exists, the Personal Information Protection and Electronic Documents Act (PIPEDA), each jurisdiction has its own law, resulting in different regulations between the jurisdictions and sometimes even within provinces. This complicates the existence of pan-Canadian registries.

The implementation of electronic health records (EHRs) is of high priority in the country, but has so far had limited success. Most physicians have not adopted EHRs in a meaningful way and CIHI is currently working on new national standards on meaningful use of EHRs for primary care. CIHI is prioritizing EHRs over the creation of new registries, with the goal that certain data may get extracted from the EHRs for a specific purpose, for example a disease such as diabetes. The data would then be used to create data sets that re- semble a diabetes registry.

The healthcare systems and their approaches to quality measurements in the provinces of Ontario, Saskatchewan and Quebec are presented in more detail in this report. Ontario and Saskatchewan were chosen since they were mentioned as good examples during the many interviews performed during the course of this project, and indeed proved to have implemented several healthcare quality measurements initiatives. Quebec was chosen since it applies a different approach to evaluating healthcare quality, heavily involving its citizens in the process.

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Sammanfattning

Den kanadensiska sjukvården består av flera parallella system eftersom varje provins och territorium ansvarar för vården inom den egna jurisdiktionen. Sedan 1990-talet, när man ansåg att vårdkvaliteten hade försämrats och särskilt väntetiderna uppfattades som oacceptabla, har man vidtagit flera åtgärder på federal och regional nivå för att öka kvaliteten och tillgången på vård. I samband med detta enades man om att utbyta information mellan jurisdiktioner och federala organisationer. Dessutom inledde man utvecklingen av ett omfattande ramverk för rapportering, och jämförbara indikatorer började användas.

Det finns många kliniska databaser och register i landet. Canadian Institute of Health Information (CIHI) driver 24 databaser och fem register, de flesta av dem landsomfattande.

Det mesta av informationen samlas in via administrativa system, till exempel databaser som används vid utskrivning på sjukhus. Utöver CIHI deltar de flesta jurisdiktioner och särskilt provinserna i arbetet med att samla in och analysera data.

Oron för kvaliteten på sjukvården i landet har resulterat i att ett mycket stort antal organisationer, både provinsiella och federala (territorierna har hittills inte varit aktiva i frågan) rapporterar hälsodata, inklusive hälsoindikatorer. Dessutom används många olika typer av indikatorer och för olika syften, vilket gett upphov till en situation som vissa kallar

”indikatorkaos”.

Även om det finns en landsomfattande integritetslag, Personal Information Protection and Electronic Documents Act (PIPEDA), har varje jurisdiktion sin egen lagstiftning, vilket resulterat i olika regelverk mellan jurisdiktionerna och ibland även inom provinserna.

Detta komplicerar upprättandet av centrala register.

Införandet av elektroniska patientjournaler är högt prioriterat, men det har hittills inte varit särskilt framgångsrikt. De flesta läkare har inte anammat de elektroniska patientjournalerna på ett effektivt sätt, och CIHI arbetar för närvarande med att ta fram nya nationella stan- darder för en effektiv användning av elektroniska patientjournaler inom primärvården.

CIHI prioriterar elektroniska patientjournaler framför etablering av nya register. Målet är att kunna extrahera data ur de elektroniska patientjournalerna för särskilda ändamål, till exempel uppgifter om sjukdomar som diabetes. Uppgifterna skulle sedan kunna användas för att skapa datauppsättningar som liknar ett diabetesregister.

I den här rapporten presenteras sjukvårdssystemen och metoderna för kvalitetsmätningar i provinserna Ontario, Saskatchewan och Quebec. Ontario och Saskatchewan valdes eftersom de togs upp som goda exempel under de många intervjuer som genomfördes under projektet och för att de har vidtagit ett flertal åtgärder för att mäta vårdkvaliteten.

Quebec valdes eftersom man där använder en annan strategi för att bedöma vårdkvalitet som innebär att medborgarna i högre grad deltar i processen.

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1 Introduction to the healthcare system

The text in this chapter is primarily based on two reviews of the Canadian healthcare system by the Commonwealth Fund¹ and the European Observatory on Health Systems and Policies².

The Canadian healthcare system is composed of ten provincial, three territorial and the federal system, which includes subsystems. The Canada Health Act, which is pan- Canadian, defines a set of common programs and services, but the provinces and territories in Canada have the primary responsibility for the delivery and organization of health services in the jurisdictions. In turn, all the provincial governments, as well as the Territories, have established some form of regional health authorities (RHAs). The RHAs have been delegated the responsibility by the province/territory to plan the delivery of publicly funded health care services on a local basis. The governance, organization and delivery of health services is decentralized for at least three reasons, according to Marchildon: (1) provincial and territorial responsibility for the funding and delivery of most healthcare services; (2) the status of physicians as independent contractors; and (3) the existence of multiple organizations, from RHAs to privately governed hospitals, that operate at arm’s length from provincial governments. There has recently been a move towards greater cen- tralization in terms of reducing or eliminating RHAs in some parts of the country.

All provincial and territorial residents are covered by the universal health insurance programs of their region. The health insurance programs are co-financed by the federal government, and the funding requires adherence by the provinces and territories to five criteria of the Canada Health Act, which sets standards for hospital, diagnostic and physician services across the country. All RHAs plan and fund a wide array of healthcare services such as hospital, home care and long-term care services within a defined geographic area. In many jurisdictions, the RHAs also manage the day-to-day delivery of healthcare services.

However, most health professionals self-regulate under legal frameworks established by provincial and territorial governments.

Canadian public healthcare costs are among the highest of OECD countries, but below the costs in the United States. Both systems are predominantly fee-for-service³ and it has been argued that the reason for the lower costs in Canada is the lower administrative costs asso- ciated with a single payer public insurance system compared to a private multi-payer system. General taxation provides the funding of the public programs and the federal government contributes funding on a per capita basis through the Canada Health Transfer, composed of block grants to the provinces and territories. The public sector (Medicare) accounts for approximately 70 percent of total health funding, and out-of-pocket payments and private health insurance account for 15 and 12 percent, respectively. There is no pay- for-performance funding from the federal government to the jurisdictions, and in the few cases where this occurs in the country it is within the provinces. The federal government

1 S. Thomson, R. Osborn, D. Squires, and M. Jun, International Profiles of Health Care Systems, 2012, The Commonwealth Fund, November 2012. 1645_Squires_intl_profiles_hlt_care_systems_2012 commonwealth fund, accessed February 18, 2013.

2 Gregory P. Marchildon. Canada: Health system review. Health Systems

in Transition, 2013; 15(1): 1 – 179. http://www.euro.who.int/en/who-we-are/partners/observatory/health- systems-in-transition-hit-series/countries-and-subregions/canada-hit-2013, accessed April 2, 2013.

3Canadian Institute for Health Information, National Physician Database, 2010-2011, Ottawa, Ont.

https://secure.cihi.ca/estore/productFamily.htm?locale=en&pf=PFC2032, accessed April 3, 2013.

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provides additional compensation for First Nations and Inuits, among other specific groups. A majority of the population (approximately two-thirds) has purchased private health insurance, which, depending on the plan, may cover a range of services including vision and dental care, as well as prescription drugs, rehabilitation and home care.

Most physicians are in private practices and approximately half are family doctors acting as gatekeepers for further care. Family physicians generally operate on a small scale, either in solo practices or in small group practices with other physicians and health professionals.⁴ A patient can choose a primary care doctor, when there is a choice available, which is not always the case, particularly in the rural areas. In 2004 the 10-year Plan to Strengthen Health Care was launched. All governments decided to increase the access to multidisciplinary primary care teams to at least half of their respective populations by 2011, receiving financial incentives to do so. Examples of such initiatives are Family Health Teams in Ontario, Primary Health Networks in Alberta and Family Medicine Groups in Quebec. Hospitals are often managed locally and are a mixture of public and private, primarily non-profit, organizations.

The main stakeholders representing healthcare providers in Canada are the national organizations representing physicians and nurses. These organizations represent the professional interests of their members to governments, health services organizations, and the Canadian public. They operate at a national level, but do not engage in collective bargaining on behalf of their members, which is handled by separate provincial and territorial associations and unions.⁵

4 E-mail correspondence December 2012 with Jamie Baker, Senior Policy Advisor, Bilateral & Regional Relations, Health Portfolio Office of International Affairs Santé, Health Canada & Public Health Agency of Canada.

5 E-mail correspondence December 2012 with Jamie Baker, Senior Policy Advisor, Bilateral & Regional Relations, Health Portfolio Office of International Affairs Santé, Health Canada & Public Health Agency of Canada.

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2 Discussions on and initiatives for increased quality and follow-up in healthcare

The total expenditure on health in Canada was $CAD 193.1 billion in 2010, which accounted for 11.9 percent of the gross domestic product (GDP). The GDP is expected to grow faster than the health costs in 2012, resulting in a lower total health spending compared to GDP, but the cost of the healthcare is still increasing slightly.⁶ In the early 1990s, most areas in the country reduced or eliminated their fiscal deficits, which resulted in reduced healthcare budgets and program restructuring. By the late 1990s healthcare wait times had increased and the quality of care was perceived to have deteriorated, “resulting in a national sense of urgency to improve the timeliness and quality of care”⁷. In 2000 an agreement on a $23.4 billion federally funded package of initiatives to strengthen and re- new Canada’s publicly funded health care services was reached.⁸ The federal and provincial/territorial governments initiated a number of task forces and studies in order to collect the views of the Canadian population on the healthcare system. The studies⁹ showed that there was a need for healthcare reform and that the priorities of it should be within: primary health care, home care, catastrophic drug coverage, access to diagnostic/medical equipment and information technology and an electronic health record (EHR).

It was agreed that access to timely care across Canada was one of the biggest concerns and a national priority. The federal and provincial/territorial governments agreed on an action plan based on the following principles:

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universality, accessibility, portability, comprehensiveness, and public administration;

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access to medically necessary health services based on need, not ability to pay;

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reforms focused on the needs of patients to ensure that all Canadians have access to the health care services they need, when they need them;

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collaboration between all governments, working together in common purpose to meet the evolving health care needs of Canadians (some of this work is done within the Council of the Federation, an institution created to promote cooperation between the regions¹⁰);

6 Canadian Institute for Health Information, National Health Expenditure Trends, 1975 to 2012, Ottawa, Ont.

https://secure.cihi.ca/free_products/NHEXTrendsReport2012EN.pdf, accessed April 3, 2013.

7 ”Benchmarking health care in federal systems: the Canadian experience”, Baranek, P., Veillard, J. and Wright, J. from. Benchmarking in Federal Systems, Roundtable Proceedings, Melbourne, 19–20 December 2010, Edited by: Alan Fenna & Felix Knüpling,

http://www.forumfed.org/post/benchmarking_federal_systems.pdf

9 Commission on the Future of Healthcare in Canada; Romaniv, R, Building on Values: The future of Healthcare in Canada, 2002, http://publications.gc.ca/collections/Collection/CP32-85-2002E.pdf, accessed April 3, 2013. The Standing Senate Committee on Social Affairs, Science and Technology, Kirby, M.J. L. et al, Reforming Health Protection and Promotion in Canada: Time to Act, 2003.

http://www.parl.gc.ca/Content/SEN/Committee/372/soci/rep/repfinnov03-e.htm#1.2 Review of Selected Documents, accessed April 3, 2013, and Premier´s Advisory Council on Health for Alberta, Mazankowski, D.

P. C. A Framework for Reform, 2001 http://www.health.alberta.ca/documents/Mazankowski-Report-2001.pdf, accessed April 3, 2013.

10 http://www.councilofthefederation.ca/index.html, accessed March 13, 2013.

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advancement through the sharing of best practices;

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continued accountability and provision of information to make progress transparent to citizens; and

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jurisdictional flexibility.¹¹

In conjunction to this plan, an agreement on the expansion of the sharing of information on best practices and the regular reporting to Canadians on health status, health outcomes, and the performance of publicly funded health services, was initiated. The provinces/territories agreed to collaborate on the development of a comprehensive framework for reporting, using comparable indicators in the areas of health status, health outcomes and the quality of healthcare services. In late 2002, public reports containing up to 67 indicators, were made available by each province/territory. However, according to Baranek et al, not all indicators were directly comparable and data quality was suspect in many circumstances, resulting in an inability to benchmark provincial and territorial health systems.¹²

The federal, provincial and territorial governments signed the “Accord on HealthCare Renewal” in 2003. The goal was to improve the accessibility, quality and sustainability of the public healthcare system and to enhance transparency and accountability. $36.8 billion over five years was provided to the regions through a new federal transfer mechanism (the Canada Health Transfer). The creation of the independent Health Council of Canada, with a mandate to monitor and make annual public reports on the implementation of the Accord, was among the initiatives. The Accord also established parameters for an enhanced accountability initiative, beyond that of the 2000 agreement. This initiative focused on the development of comparable indicators regarding access, quality, sustainability, health status, and wellness.¹³

In 2004, the ‘Ten-Year Plan to Strengthen Health Care’ was decided upon, as mentioned above, in which the federal government committed $41.3 billion in additional funding, including targeted dollars for reducing healthcare waiting times.¹⁴ The Wait Times Reduction Fund was created and was primarily to be used for training and hiring more health professionals, clearing backlogs, building capacity for regional centers of excellence, expanding appropriate ambulatory and community care programs, and/or tools to manage wait times. Each province/territory agreed to collect and provide meaningful information to Canadians on progress made in reducing wait times¹⁵, as follows:

11 http://www.hc-sc.gc.ca/hcs-sss/delivery-prestation/fptcollab/2003accord/index-eng.php, accessed February 5, 2013.

12 Benchmarking health care in federal systems: the Canadian experience”, Baranek, P., Veillard, J. and Wright, J. from. Benchmarking in Federal Systems, Roundtable Proceedings, Melbourne, 19–20 December 2010, Edited by: Alan Fenna & Felix Knüpling,

13 Benchmarking health care in federal systems: the Canadian experience”, Baranek, P., Veillard, J. and Wright, J. from. Benchmarking in Federal Systems, Roundtable Proceedings, Melbourne, 19–20 December 2010, Edited by: Alan Fenna & Felix Knüpling,

15 Canadian Institute for Health Information, Wait Times in Canada-A Summary 2012.

http://www.cihi.ca/CIHI-ext-

portal/internet/EN/SubTheme/health+system+performance/access+and+wait+times/cihi010647 accessed April 3, 2013.

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•

Comparable indicators of access to healthcare professionals, diagnostic and treatment procedures with a report to their citizens will be established.

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Evidence-based benchmarks for medically acceptable wait times starting with cancer, heart, diagnostic imaging procedures, joint replacements, and sight restoration will be established.

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Multi-year targets to achieve priority benchmarks will be established.

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Provinces and territories will report annually to their citizens on their progress in meeting their multi-year wait time targets.¹⁶

According to Baranek et al, there was initially reluctance to engage in performance benchmarking in the regions, due to the fear of being compared, the costs involved, the design of the data collection systems and the timetables and workloads. Through political commitments this lack of enthusiasm was overcome, however.¹⁷

Numerous national stakeholders have also contributed to the public discussion on improving the quality of healthcare and have played a major role in shaping healthcare policy in the country. These include health services associations, professional organizations such as regulatory bodies, protective associations, trade unions, industry associations and patient and disease advocacy associations, of which many are provincial. According to Marchildon, the Canadian Nurses Association (CNA) and the Registered Nurses Associa- tion of Ontario (RNAO) have considerable political influence. There are numerous civil society groups that act as policy advocates, such as the Canadian Healthcare Association, the Canadian Health Coalition, the Canadian Public Health Association (CPHA), the Canadian Women’s Health Network, the Canadian Home Care Association, as well as industry associations, such as the Canadian Generic Pharmaceuticals Association, Canada’s Research-Based Pharmaceutical Companies, and the Canadian Life and Health Insurance Association.¹⁸

The Canadian Medical Association (the national advocacy body for physicians in Canada) released a report in 2010 that offered its views and recommendations to transform health care in Canada. It runs the Health Care Transformation program, comprised of numerous initiatives in areas such as; the selection and adoption of clinical practice guidelines; access to care; health equity; electronic prescribing and the identification of indicators to assess the performance of the healthcare system.¹⁹

The Canadian College of Health Leaders is a national, member-driven, not-for-profit association dedicated to ensuring that the country’s health system benefits from capable, competent, and effective leadership. Ray Racette, President and CEO, explains that Cana- dians have high trust in their healthcare and that patients that use the healthcare system rate it higher than people that do not use it. There are, however, many discussions on how to improve the home-based care as well as how to clarify the role of hospitals. There is no

16 http://www.hc-sc.gc.ca/hcs-sss/delivery-prestation/fptcollab/2004-fmm-rpm/index-eng.php, accessed February 10, 2013.

19 http://www.cma.ca/health-care-transformation, accessed February 10, 2013.

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capacity to care for the patient in the right setting and therefore they are treated in the wrong place. Many patients are treated in hospitals when they belong in alternative levels of care. On any given day in Canada, alternate level of care (ALC) patients occupy the equivalent of approximately 7,550 beds in acute care hospitals. In 2008–2009, more than 92,000 hospital stays, or more than 2.4 million hospital days, were considered ALC in Canada²⁰. There are also discussions about access to healthcare. It is likely that in the future the population will demand to get the same kind of treatment and service in all parts of the country which will probably result in more homogenous care. Since the federal government nowadays has total responsibility for Inuits, including their healthcare, the federal government will be more able to influence the healthcare across all regions, in a somewhat similar way to the Centers for Medicare and Medicaid in the United States.²¹ Dr. Racette has in a speech highlighted three problems in the Canadian healthcare system of today:

1. Health delivery is primarily focused on hospitals or acute care services.

2. The consumer is marginalized in the decision making.

3. The health system is fragmented without a national health agenda.²²

It has, however, been argued that decentralized healthcare systems are better suited for innovations, as well as being rich environments for evaluating natural experiments.²³

20 Canadian Institute for Health Information, Healthcare in Canada, 2010

21 Interview January 10, 2013 with Dr. Ray Racette, President and CEO at Canadian College of Health Leaders

22 http://openparliament.ca/committees/health/41-1/67/ray-racette-1/only/, accessed January 15, 2013.

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3 Information systems and registers

3.1 Some organizations that perform measurements

There are a large number of organizations commissioning and performing measurements on the healthcare system in the country illustrated in a chart from the Health Council of Canada:²⁴

Fig. 1. Organizations involved in measurements in the healthcare system.

Source: Health council Canada.

Additional organizations will produce reports on Canadian healthcare performance, such as the Conference Board of Canada, the Frontier Centre for Public Policy, the Hospital Report Research Collaborative, the Institute for Research on Public Policy, the Fraser Institute and the Canadian Centre for Policy Alternatives. Academic researchers also conduct studies comparing Canadian health system performance.²⁵

24 Health Council of Canada, “Measuring and reporting on health system performance in Canada:

Opportunities for improvement”, May 2012. Retrieved February 7, 2013 from http://healthcouncilcanada.ca/tree/HCC_Health_Indicators_WP_EN_WEB.PDF

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Some of the most important organizations commissioning and performing measurements on the healthcare system are described below:

Health Canada²⁶is the federal ministry responsible for helping Canadians maintain and improve their health. Every two years it reports data on a set of health indicators through its Healthy Canadians report. It uses comparable health indicators first developed by a federal, provincial, and territorial committee, in response to the Health Accords and previ- ous initiatives.²⁷

The Public Health Agency of Canada (PHAC)²⁸ focuses on preventing chronic diseases, like cancer and heart disease, preventing injuries and responding to public health emergen- cies and infectious disease outbreaks. PHAC reports national health surveillance data on chronic and communicable diseases such as diabetes and influenza, and provides these data in map and tabular formats.²⁹

Health Council of Canada³⁰was established by Canada's Prime Minister and the provincial and territorial premiers in order to monitor and make annual public reports on the implementation of the Health Accords. It is an independent, non-profit organization funded by Health Canada.

Statistics Canada³¹ is a federal agency that runs about 350 surveys on most aspects of the life of Canadians. It provides data about the health of Canadians and the healthcare system.

Statistics Canada conducts the Canadian Community Health Surveyand the Canadian Health Measures Survey,and uses data from the census and the Canadian Socioeconomic Database (CANSIM)to report on health indicators. Statistics Canada also partners with the Canadian Institute of Health Information (CIHI, see below) on the annual Health Indica- tors report and uses some of CIHI’s databases for its reporting.³²

The Canadian Institute of Health Information (CIHI)³³ is an independent, not-for-profit corporation that provides information on Canada’s health system and the health of the population. The Institute is funded by federal, provincial and territorial governments. CIHI is responsible for collecting administrative data related to health care services utilization and works towards developing measurement standards to enable pan-Canadian comparison of data reported using health indicators. CIHI also utilizes data from other sources, including Statistics Canada. CIHI hosts the Canadian databases of health data (approximately 24 databases and 5 registries) and produces regular comprehensive public reports on the healthcare system, as well as on the health outcomes and health status of Canadians, using health indicators derived from comparable data. Health Care in Canada offers a national picture of Canadians’ health status and health system performance, providing

26 http://www.hc-sc.gc.ca/ahc-asc/index-eng.php, accessed February 5, 2013.

28 http://www.phac-aspc.gc.ca/, accessed February 5, 2013.

30 http://www.healthcouncilcanada.ca/content.php?mnu=5, accessed February 5, 2013.

31 http://www.statcan.gc.ca/, accessed March 13, 2013.

33 www.cihi.ca, accessed January 25, 2013.

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interpretation of the data, and where appropriate, making international comparisons of health indicator data. CIHI also produces topic-specific and health condition-specific reports, some as one-time projects and others more regularly. ³⁴

CIHI and Statistics Canada initiated the Health Indicators Project in 1999, providing com- parable data on the health of Canadians, performance of the health system, and the determinants of health. The report offers statistical comparisons to national, provincial, or health region averages, along with interpretation of the data. The project developed the Health Indicators Framework, which has five dimensions: Health Status; Non-medical Determinants of Health; Health System Performance; Community and Health System Characteristics; and Equity (as a cross-cutting theme).³⁵ Below is a diagram of the Indicator Framework:³⁶

36 https://secure.cihi.ca/free_products/health_indicators_2012_en.pdf, accessed January 15, 2013.

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Fig. 2. From Health Indicators 2012.³⁷

37https://secure.cihi.ca/free_products/health_indicators_2012_en.pdf, accessed March 17, 2013.

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CIHI was mandated in 2004 to report on progress towards reducing the wait times made in the 10-Year Plan to Strengthen Health Care, and worked with provinces and territories to develop comparable data infrastructures for this reporting and has developed an interactive website for wait times.³⁸ CIHI continues to work towards developing new data infrastructures and health indicators that can be reported in a comparable manner across Canada. For example, a home care database has been developed, a standard set of indicators for reporting on hospital performance has been created (through the Canadian Hospital Reporting Project) and primary health care indicators have been reviewed and updated.³⁹

CIHI has initiated a three-year plan to strengthen health system performance reporting with the objectives of: providing reporting that is tailored to the needs of different audiences;

producing analytical tools and products supporting provincial and territorial health system priorities; working with partners to build capacity for using and understanding performance measurements and tools; and reducing “indicator chaos” (see section 4.2) by working with partners. CIHI is launching an interactive website in November 2013 for this purpose.⁴⁰

The Canadian Patient Safety Institute (CPSI)⁴¹ is a not-for-profit organization that exists to raise awareness and facilitate implementation of transformative ideas and best practices in patient safety. CPSA is funded by Health Canada. An example of the work of CPSI is its work towards the implementation of a Surgical Safety Checklist across Canada.⁴²

Accreditation Canada⁴³is a not-for-profit, independent organization that provides health organizations with an external peer review to assess the quality of their services based on standards of excellence. Accreditation Canada is accredited by the International Society for Quality in Health Care.

Provinces. There are several organizations that assess progress in improving the quality, effectiveness, and sustainability of the healthcare system in the country. Most data collected and reported on takes place within the provinces, while the territories are not as far along. All provinces report wait time information, but in the addition to this, data collection and reporting on health indicators varies. Some provinces produce regular reports on health system performance. Most quality improvement initiatives take place directly at the provincial and territorial level, with many jurisdictions having established quality councils, such as Alberta, British Columbia, Ontario, New Brunswick, Quebec and Saskatchewan.⁴⁴ Some of these will be discussed in more detail below. They monitor and

38 http://waittimes.cihi.ca/ and Canadian Institute for Health Information, Wait Times in Canada-A Summary 2012. http://www.cihi.ca/CIHI-ext-

portal/internet/EN/SubTheme/health+system+performance/access+and+wait+times/cihi010647 accessed April 3, 2013.

40 Interview January 30, 2013 with Kathleen Morris, Director Health System Analysis and Emerging Issues, Canadian Institute for Health Information (CIHI).

41 http://www.patientsafetyinstitute.ca/English/Pages/default.aspx, accessed March 13, 2013.

42 http://www.saferhealthcarenow.ca/EN/Interventions/SafeSurgery/Pages/SurgicalSafetyChecklist.aspx, accessed February 10, 2013.

43 http://www.accreditation.ca/,accessed February 10, 2013.

44 “Measuring and Reporting on Quality of Care and Patient Safety in Canada: Focusing on What matters”, Veillard, J., Gula, C.,, Huynch, T. and Klazinga,N., Healthcare Papers, 12(1) 2012: 32-37

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publicly report on health system performance and health status across the province and, in most cases, at the health region level (see Table 1 below):

Fig. 3. Health Council of Canada, “Measuring and reporting on health system performance in Canada: Opportunities for improvement”, May 2012.⁴⁵

Some health quality councils use health indicator reporting as part of quality improvement strategies within the provinces (as in Ontario and Saskatchewan). In addition to health quality councils, some provinces have academic institutions or organizations that collect and analyze health care system data. One example of this is the Institute for Clinical Evaluative Sciences (ICES)⁴⁶.

ICES is an independent, non-profit organization, whose core business is to conduct research about healthcare and health services in Ontario. It is funded by the Ontario Ministry of Health and Long-Term Care and also receives grants and project-specific funds from provincial and national organizations, including CIHI. The ICES´ website shows a list of disease cohorts and registries hosted at ICES, each containing information on Ontarians with a specific condition or procedure:

45 Retrieved February 7, 2013 from

http://healthcouncilcanada.ca/tree/HCC_Health_Indicators_WP_EN_WEB.PDF

46 http://www.ices.on.ca/index.html, accessed February 20, 2013.

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Dataset Description Available

from Updates

CCN Cardiac Care Network Data 1991 Annually

CT-MRI A consecutive series of CT and/or MRI scans One-time

OCR Ontario Cancer Registry 1964 Annually

EFFECT Enhanced Feedback for Effective Cardiac

Treatment 1999 As available

RCSN Registry of Canadian Stroke Network 2003 As available MOMBABY Dataset linking the admission records of

delivering mothers and their newborns 1988 Annually

ODD Ontario Diabetes Database 1991 Annually

Fig. 4. Extract from Institute for Clinical Evaluative Sciences (ICES) table of registries and cohorts.⁴⁷

Another local example is the Manitoba Centre for Health Policy (MCHP), which is a research centre of excellence within the Faculty of Medicine at the University of Manitoba.

It conducts research on health services, population and public health, and the social determinants of health. MCHP develops and maintains a population-based data repository on behalf of the Province of Manitoba for use by the research community. The repository is a comprehensive collection of administrative, registry, survey, and other databases primarily comprising residents of Manitoba. It was developed to describe and explain healthcare patterns and profiles of health and illness.⁴⁸MCHP has permanently linked more than 60 databases.⁴⁹

Provincial and territorial governments are also working together to identify and share promising practices, and collaborate for improved quality and sustainability through work initiated under the Council of the Federation working group on Health Care Innovation.

On July 26, 2012, premiers received a report from the working group which recommended initial areas of work to promote the adoption of clinical practice guidelines, pursue team- based models, share information, and improve communication about health human re- sources.⁵⁰

3.2 Databases and registries

As discussed above, many types of measurements are performed in Canada, both on a national and a provincial/territorial level. Healthcare quality databases and registers exist in different fashions, with different purposes and owners. Some are disease registries, some cohort registries, but most are administrative databases, such as the Discharge Abstract Database discussed below. These only capture in-hospital care and contain no out-patient data. There is no complete list of all the registries in the country.⁵¹ CIHI collects data from

47 http://www.ices.on.ca/webpage.cfm?site_id=1&org_id=26&morg_id=0&gsec_id=5314&item_id=5328, retrieved February 27, 2013.

48 http://umanitoba.ca/faculties/medicine/units/community_health_sciences/departmental_units/mchp/about.html, accessed April 3, 2013.

49 E-mail correspondence March 28, 2013 with Jeremy Veillard,, Vice President of Research and Analysis, Canadian Institute of Health Information

50 Jamie Baker, Senior Policy Advisor, Bilateral & Regional Relations

Health Portfolio Office of International Affairs Santé, Health Canada & Public Health Agency of Canada

51 Interview February 13, 2013 with Susan Brien, Policy Lead, Health Council Canada.

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providers in all regions of the country and maintains approximately 24 databases and 5 registries. Below are some examples from CIHI’s website⁵²:

The Hospital Morbidity Database (HMDB) is a national data holding that captures ad- ministrative, clinical and demographic information on hospital inpatient events. It contains inpatient data collected via DAD and inpatient records submitted from Quebec.

The Discharge Abstract Database (DAD) contains demographic, administrative, and clinical data on inpatient hospital discharges. Facilities in all provinces and territories ex- cept Quebec are required to report to DAD. Quebec acute inpatient records are submitted to CIHI through a different process and are included in the HMDB.

The Canadian Hospital Reporting Project (CHRP) is a national quality improvement initiative. It has an interactive web-based tool which gives access to indicator results for more than 600 facilities from every province and territory in Canada.

The National Rehabilitation Reporting System (NRS) contains client data collected from participating adult inpatient rehabilitation facilities and programs across Canada.

The Ontario Mental Health Reporting System (OMHRS) collects, analyzes, and reports on information submitted to CIHI about individuals admitted to designated adult mental health beds in the province of Ontario.

The Canadian Joint Replacement Registry (CJRR) was developed to provide patient- level clinical, surgical and prosthesis information beyond that captured in the HMDB and DAD.⁵³It is a national registry that captures information on primary and revision hip and knee replacements, following patients over time to determine revision rates and outcomes.

It was developed by CIHI and the orthopedic surgeons of Canada. The goals of the registry are to: improve the quality of care and clinical outcomes of joint replacement recipients through the collection and effective use of relevant data on orthopedic implants and surgical procedures; improve the quality of surgical practices; and study risk factors that affect outcomes. The registry has collected data on approximately 260,000 hip and knee replacement procedures across Canada. It contains demographic, clinical and implant information on all patients undergoing the procedures. All Ontario hospitals submit data to CJRR either by electronic filing or a web-based data submission and reports tool. Paper submission is no longer accepted in Ontario.⁵⁴Surgeons may receive data submitted to CJRR in return by CIHI, in this case often together with information submitted by peers in order to compare the outcome of the procedures.⁵⁵CJRR was first launched in May 2001 as a voluntary registry. After an initial period of 70–80 percent participation, the numbers of entries submitted to the registry plummeted in Ontario and today participation is mandated by Ontario and British Columbia. Manitoba will soon make it mandatory as well and the goal is to reach 80 to 90 percent participation in the country. When CJRR was initially developed, it was modeled on the Swedish Knee and Arthroplasty Register and the Swedish National Hip Arthroplasty Register.⁵⁶

52 http://www.cihi.ca/CIHI-ext-portal/internet/EN/Home/home/cihi000001, accessed March 14, 2013.

53 http://www.cihi.ca/CIHI-ext-

portal/internet/EN/TabbedContent/types+of+care/specialized+services/joint+replacements/cihi021359, accessed February 20, 2013

54 http://www.cihi.ca/CIHI-ext-portal/pdf/internet/BUL_31JUL11_PDF_EN, accessed February 18, 2013.

55 Interview March 7, 2013 with Greg Webster, Director of Primary Health Care Information and Clinical Registries, Canadian Institute for Health Information (CIHI).

56Interview March 7, 2013 with Greg Webster, Director of Primary Health Care Information and Clinical Registries, Canadian Institute for Health Information (CIHI).

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CIHI has been mandated to develop the Canadian Multiple Sclerosis Monitoring System. Since it was found that Canadians suffer from multiple sclerosis more than the average global population, interest from politicians and the public in creating such a registry has been significant.⁵⁷ CIHI was therefore given the task to develop the registry in collaboration with people living with MS and their caregivers, the MS Society of Canada, the Canadian Network of Multiple Sclerosis Clinics, clinicians, researchers, international experts, and various governments.

The Canadian MS Monitoring System will:

•

Record, measure and monitor the evolution and treatment of multiple sclerosis in Canada.

•

Increase understanding of disease patterns across Canada, variation in use of treatments and long-term patient outcomes.

•

Provide a minimum data set and data standards, adding quality and value to current data collection and analysis capabilities.

•

Fill an important information gap by providing longitudinal data that is pan-Canadian and comparable across jurisdictions and that enables sound policy and effective health system management that improve health and healthcare.

MS clinics across Canada submit data to the Canadian MS Monitoring System using data extraction from their local registry. As of April 2013, MS clinics, community neurologists and family physicians that care for people living with MS will use CIHI’s secure online data entry tool. In the future, patient-reported outcomes could be collected directly from people living with MS.⁵⁸

The development of a Multiple Sclerosis registry is a new endeavor by CIHI, since other registries have been developed in response to requests from the clinicians themselves. In addition to the CJRR and MS registries, CIHI administers the Organ registry, the national Trauma registry and the Ontario Trauma registry. However, the last is being wound down since the data can nowadays be found elsewhere.⁵⁹

Some other Canadian registries are described below:

The Canadian Cancer Registry (CCR) is a joint initiative between the thirteen Canadian provincial and territorial cancer registries and the Health Statistics Division of Statistics Canada, where the data are housed. It is an administrative survey that collects information on cancer incidence in Canada with the provincial registries feeding data to the registry.

The goal of the CCR is to enable the study of cancer patterns and trends and the monitoring of differences in cancer risks among different populations. By providing a large database, information about cancer incidence and survival in Canada can be generated. The information is used for descriptive and analytic epidemiological studies to: identify risk

58 http://www.cihi.ca/CIHI-ext-

portal/internet/en/tabbedcontent/types+of+care/specialized+services/multiple+sclerosis/cihi018060, accessed February 10, 2013.

59 Interview January 30, 2013 with Kathleen Morris, Director Health System Analysis and Emerging Issues, Canadian Institute for Health Information (CIHI).

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factors for the cancer; plan, monitor and evaluate a broad range of cancer control programs (e.g. screening); and conduct research in health services and economics.⁶⁰

The Canadian Cystic Fibrosis Patient Data Registry (CPDR) is administered by Cystic Fibrosis Canada, a foundation, and has been in existence since the early 1970s. It collects annual data on patients with cystic fibrosis who attend 42 specialized clinics throughout Canada. The goal of the CPDR is to monitor important clinical trends in the Canadian CF population. The data collected within the CPDR can be used for quality improvement efforts.CPDR monitors epidemiological trends in the population and helps direct therapeutic advances responsible for improved survival. ⁶¹

The Registry of Canadian Stroke Network (RCSN) is a clinical database characterizing the demographics, stroke type, severity, process of care, hospital treatments, complications and outcomes of patients with stroke or transient ischemic attack seen at participating Canadian hospitals. The data collected serve two key purposes: to provide a rich clinical database that is accessible to investigators for research projects, and to provide a mechanism for standardized and consistent measurement and monitoring of the quality of stroke care delivery on an ongoing basis at participating institutions, in health care regions, and at a provincial level. Hospitals are provided with performance indicators of “best care”, so that they may evaluate the quality of the care they are providing and compare their performance with other hospitals of provincial averages.⁶²

In addition to the National Registers described above, there are a series of provincially specific registers, such as the Quebec Pregnancy Registry, which is a specialized popula- tion database built by linking 4 administrative databases. It contains data on mothers and children at birth (medical charts; lifestyle data; family and personal medical history including maternal weight and weight gain); data on pregnant women in Quebec Province who received a diagnosis of pregnancy between 1997 and 2010, comprising over 450,000 pregnancies. Updates are done every 2 years. This registry is advantageous compared to other data sources whose sample sizes are often insufficient to rule out low-to-moderate increased risks for even the more commonly occurring adverse perinatal outcomes such as heart defects, neural tube defects, and oral clefts.⁶³

Ontario Renal Reporting System is the result of the cooperative efforts of all dialysis providers in Ontario, through which a database has been established of all chronic dialysis patients in Ontario – the Ontario Renal Reporting System (ORRS). ORRS captures comparable data from all chronic kidney disease (CKD) providers. These data are essential to improve system quality, performance, planning and funding allocation. The long-term information management strategy focuses on integrating electronic data collection and transfer within ORRS. Until this solution is available, the aim is to improve the coordina- tion of existing data collection and reporting processes.⁶⁴

Better Outcomes Registry and Network (BORN). Ontario is increasing its capacity to plan and deliver maternal-child services through the Better Outcomes Registry & Network

60 http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3207&lang=en&db=imdb&adm

=8&dis=2, accessed February 10, 2013.

61 http://www.cysticfibrosis.ca/en/, accessed February 10, 2013.

62 http://www.canadianstrokenetwork.ca/index.php/research/theme-ii/registry-of-the-canadian-stroke-network/, accessed March 5, 2013.

63 http://aberard.ca/english/cohorts.asp and http://www.bridgetodata.org/node/1013, accessed February 10, 2013.

64 http://www.renalnetwork.on.ca/priorities/orrs/, accessed April 4, 2013.

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Ontario (BORN Ontario - previously the Ontario Perinatal Surveillance System - OPSS).

By providing high quality evidence for providers, policy makers and researchers in the province, BORN facilitates and improves the provision of health care to the maternal-fetal and child populations throughout the province. In keeping with the areas of expertise of the founding members, BORN Ontario is currently focused on Maternal Newborn Outcomes, Midwifery, Congenital Anomalies Surveillance, Neonatal Screening, and Prenatal Screen- ing, and committees are now being formed to advise BORN on its activities in these areas.⁶⁵

65 http://www.bornontario.ca/about-born/, accessed April 4, 2013.

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4 Conditions

4.1 Different privacy rules

One of the main obstacles when collecting data in Canada seems to be the decentralized system that exists in the country. Not only is the healthcare system decentralized, but different rules and regulations apply in different parts of the country when data is collected for quality measurements. The federal law “Personal Information Protection and Electronic Documents Act” (PIPEDA)⁶⁶, does not define the owner of health data, but rather uses the term custodian. A custodian might be the creator of the data, for example a clinician and a hospital, or an organization, such as CIHI. Most provinces have their own laws regarding privacy and protection of electronic documents, however, which makes pan-Canadian activities very complicated. In several provinces, patients must give consent to the provider to share his/her data with other organizations. In Ontario, CIHI, ICES and a few more organizations are so called “prescribed entities”, which under Ontario’s Personal Health Information Protection Act means that patients’ consent for these organizations to use their data is not specifically needed, but presumed. ICES must then ensure that the collection and use of the data is in the public good and advances medical research.⁶⁷ In contrast, the province of Quebec requires consent from patients to be able to send the data to CIHI, while other regions require consent when the custodian is a clinician, but not a facility, to send data to CIHI. In addition, the federal law has different wording regarding privacy and integrity when the entity collecting the data is public or for-profit. This means that if a physician runs a private practice he or she will have to adhere to other regulations than a physician in a public setting. This situation obviously complicates the situation even more.

There are some discussions about trying to harmonize the rules regarding these questions, but it is a sensitive issue.⁶⁸ All provinces and the territories have regulating bodies, sometimes called Privacy Commissioners, that will make audits and check that the privacy and integrity laws are adhered to.⁶⁹

An example of how the fragmented system can limit the success of collection of data is the Registry of Canadian Stroke Network (RCSN, which started in 2001 as a national registry with 21 participating hospitals throughout the country). At that time the registry had to get permission from each patient to enter their data into the database, and this turned out to be too complicated. The regulations thereafter changed and now PIPEDA exists, but in spite of the existence of the law, the provinces have their own privacy laws. There are some regions within the same province that have interpreted and implemented its law differently, however. As an illustration, Patrice Lindsay, the Director of Performance and Standards at the Canadian Stroke Network (CSN), describes how RCSN two years ago published a report on the quality of stroke care across Canada, in which 24 percent of all occurrences of stroke over the 2008-2009 period were investigated.⁷⁰ The report contains recommendations on how the best stroke care should be delivered based on analysis of the data in the

66 http://laws-lois.justice.gc.ca/eng/acts/P-8.6/index.html, accessed March 5, 2013.

67 OECD (2013), Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, New Opportunities and Data Privacy Protection Challenges, OECD Health Policy Studies, OECD, Paris.

69 http://www.priv.gc.ca/resource/prov/index_e.asp, accessed March 7, 2013.

70 http://www.canadianstrokenetwork.ca/index.php/research/theme-ii/registry-of-the-canadian-stroke-network/, accessed March 5, 2013.

Measurements for Improved Quality in Healthcare