Canadian Institute for Health Information

Historical overview

CIHI was incorporated under the Canada Corporations Act in 1994. Federal, provincial, and territorial governments created CIHI as a “not-for-profit, independent organization dedicated to forging a common approach to Canadian health information”. CIHI has a unique mandate to make health information “publicly available” to Canadians.

The Royal Commission on the Future of Health Care in Canada (Romanow Report) tabled a final report to the House of Commons on 28 November 2002 that recommended that a Health Council of Canada should be established by the provincial, territorial and federal governments to facilitate co-operation and provide national leadership in achieving the superior health outcomes. The Health Council would be built on the existing infrastructure of the Canadian Institute for Health Information and the Canadian Coordinating Office of Health Technology Assessment (CCOHTA).

The following year, in November 2003, the Standing Senate Committee on Social Affairs, Science and Technology, released a report (the Senator "Kirby" report) that emphasized the need for "cooperation among all stakeholders to reduce problems of maldistribution, undersupply, and jurisdictional competition" within the Canadian healthcare system. The report also recommend the federal government to "work with other concerned parties to create a permanent national coordinating body for HHR [health human resources], to be composed of representatives from key stakeholder groups and the different levels of government". CIHI co-authored a report to this standing senate committee with Canadian Institutes of Health Research (CIHR) entitled Charting the Course – A Pan-Canadian Consultation on Population and Public Health Priorities, May 2002. An outcome of the final senate report was CIHI's creation of the #Health Personnel Database with funding by #Health Canada.

CIHI's core mandate is to:

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CIHI produces various reports to support those who partake in health services research, they collaborate with a variety of stakeholders to create and maintain a broad range of health databases, measurements and standards. It draws on them as well as outside sources to develop publicly available reports and analyses.

These reports include:

The Product and Services guide cover topics such as:

CIHI also promotes the understanding and use of its data, standards and methods through online tools as well as a variety of workshops, courses and conferences.

In the CIHI report, "Prescribed Drug Spending in Canada, 2013" it was confirmed that "cost-saving generic prescription medicines have been the key to controlling drug costs in Canada." However, "those savings were offset by increased spending on newer classes of biologic drugs," or specialty drugs with "biologic drugs as the biggest cost-driver." The Canadian Generic Pharmaceutical Association (CGPA) emphasizes "the need for clear rules for the approval and reimbursement of cost-saving biosimilar products in Canada to ensure the ongoing sustainability of drug benefit plans, and improve patient access to treatments."

CIHI and federal health authorities

Canadian Institutes of Health Research (CIHR)

The Canadian Institutes of Health Research (CIHR) worked with CIHI to create the Population Health Intervention Research Casebook – 2011. This casebook suggests implementation processes supporting population health intervention research. This collaborative effort is representative of the close working relationship between these health authorities.

Data Liberation Initiative (DLI), Statistics Canada

The Data Liberation Initiative (DLI) was created in 1996, two years after CIHI’s inception. The DLI mirrors CIHI’s mandate to facilitate access to government statistical information. Their close creation evidences a federal e-Government movement.

CIHI has taken over data collection and distribution responsibilities from other federal health authorities. In 1995, Statistics Canada transferred data collection functions for the Therapeutic Abortions Database (TADB) to the Canadian Institute for Health Information. Eleven years later, in 2006, Statistics Canada passed on data publication responsibility to CIHI as well. Today, CIHI is exclusively responsible for the TADB.

In 2005, CIHI received funding from Health Canada to complete a Health Human Resources Databases Development Project. This project aimed to provide a “national picture” of five regulated health professions in Canada. CIHI forged relationships with key professional colleges and regulatory bodies to accomplish this Health HR project. The outcome of the project was the creation of the Health Personnel Database, today with eight subsidiary #databases.

Data sharing agreements

CIHI tracks data in the different provinces with the help of information that is provided by hospitals, regional health authorities, medical practitioners and governments bodies. This information is used by these various bodies to assess the various facets of our health care system and use it as a planning tool. There are several different submission applications available, some being system specific.

Most clients use the application called eDSS (Electronic Data Submission Service) to provide a secure and timely method for sending data files to CIHI and receiving data files from CIHI over the Internet. eDSS requires a registered client access codes that provides a user the ability to submit data to CIHI.

Other applications include the Canadian MIS Database Submission reports provide feedback to those providing the data, ensuring that the data provided meets the technical requirements of the MIS standards, these are private reports that can only be viewed by a selected representative. The CJRR web based data submission tool allows those included in the Canadian Joint Replacement Registry to enter and submit data and produce various reports over the internet in real time. Home Care Reporting System submission report provides those authorized with secure and timely access to reports generated by through from the data that is provided by HCRS. And e-Management Reports, that allows clients to see a web-based snapshot of all of their data submissions to six of CIHI’s data holdings. Users can also access summaries of their submissions, statistics on error rates and timeliness.

Data requests

CIHI publishes statistics and health information that are generally available to the public and can be accessed through their data holding pages. Most of the information is general statistics but customized data requests can also be made specifically, which are subject to CIHI’s privacy policy.

CIHI has two different price points for their data request services. Charges are based on “production time, the time needed to review a data request, consult and develop specifications, manipulate and/or analyze data, seek CIHI support, performing data quality assurance and data transmission.”. The first price point is applicable to Canadian health care facilities, government and not-for-profit agencies, universities, health professionals and researchers in the public sector which is $137 per hour. The second price point is applicable to the private sector, foreign clients and others not qualifying for the previous price point and this cost is at $205 per hour.

Graduate Student Data Access Program

CIHI has set up a Graduate Student Data Access Program that provides qualifying graduate students with access to CIHI’s data at no cost whatsoever. Graduate students may only use this program in order to fulfill academic requirements of their program.

The objective of GSDAP is to:

Students must be conducting research and can access data through the various databases that fall under the following subject headings, health services, health spending and health human resources. Their research must fall in line with CIHI’s mandate “to provide accurate and timely information that is required for sound health policy, effective management of the health care system and public awareness of health determinants.”

Databases

CIHI manages a number of Canadian health databases. These include:

Each CIHI database record is accompanied by Data Quality Documentation that considers coverage, collection and response, and general data limitations. This documentation is informed by the CIHI Data Quality Framework, which outlines a data quality work cycle, dimensions of data quality (Accuracy, Timliness, Comparability, Usability, Relevance), and guidelines for data quality assessment reports. Each database is also subject to a Privacy Impact Assessment.

Provincial database management

CIHI also plays a role in provincial database management. Although the Ontario Case Costing Initiative (OCCI) is a Ministry of Health and Long-Term Care (MOHLTC) database, it depends on “methodology... based on the Canadian Institute for Health Information (CIHI) MIS Guidelines”. CIHI also manages the Ontario Mental Health Reporting System (OMHRS), an Ontario exclusive database. Under the OMHRS, “hospitals collect and submit information to CIHI. CIHI collects and processes MDS-MH data and provides… outcome measures and quality indicators reports to the hospitals”. This provincial reporting system is “scalable [and] designed for pan-Canadian usage and expansion… to other Canadian jurisdictions”.

Vendor licensing

CIHI furthermore provides vendor licensing for OMHRS and other databases; “vendors providing… data collection software to participating facilities must be licensed with CIHI”. These databases depend on CIHI’s Vendor Licensing Agreement. Vendors must renew their license annually.

Canadian Population Health Initiative (CPHI)

The Canadian Population Health Initiative is a significant component of CIHI's outreach strategy. The CPHI was created and integrated with CIHI in 1999 with funding from Health Canada as part of the Roadmap I project. CPHI's specific focus is expanding the public’s knowledge of population health issues by accomplishing two main goals: fostering a better understanding of factors that affect the health of individuals and communities; and contributing to the development of policies which reduce inequities and improve the health and well-being of Canadians. CPHI achieves these goals mainly through funding population health research, gathering and analyzing population health data, and providing the public and policy-makers alike with numerous reports, presentations, and other publications.

CPHI reports are released regularly in its main publication Improving the Health of Canadians alongside Health of the Nation, an e-newsletter that was launched in February 2004 in conjunction with the organization's flagship series. In addition to these regular reports, CPHI has also released numerous other publications and products covering a range of topics that have been identified by CPHI as priority issues throughout its history. From 2004 to 2007, CPHI reporting focused mainly on the issues of obesity, place and health, and youth health. Between 2007 and 2010, CPHI's priority themes included mental health, gaps and inequalities in health care services, geographical disparities in health, and promoting healthy weights.

Electronic health records

In 2003 Canada Health Infoway Inc. and the Canadian Institute for Health Information signed a Memorandum of Understanding that formalized a partnership to develop and maintain standards required in support of Electronic Health Record (EHR) data definitions and standards in Canada. Infoway led the development of EHR Solution standards and acted as the overall program manager for EHR standards-related work, whereas CIHI's operated as the preferred partner in the development of these standards. CIHI's role also encompassed continued responsibility for data definitions, content standards and classification systems because of CIHI's widely recognized role as leader in the development of health informatics standards and records, and its record of successful collaborations with other health organizations in Canada. This initiative was aimed mainly at improving primary health care (PHC) in Canada, the most commonly experienced type of health care among Canadians. Interoperable EMRs are intended to assist in ensuring that PHC clinicians have timely and relevant information necessary to deliver, coordinate and administer care. Additionally, EMR information generated at the point of service can also be used to support quality improvement initiatives, such as clinical program management, research, and monitoring the health of the population, as well as to improve the efficiency of the health care system overall.

CIHI led the project and achieved a major milestone in 2011 with the establishment of the Draft Pan-Canadian Primary Health Care Electronic Medical Record Content Standard. The PHC EMR CS consists of 106 data elements that are commonly found in EMRs, used to support both primary uses of EMR data, such as reminders and alerts for patients with chronic conditions, and health system uses, such as a jurisdictional diabetes management registry. Moving forward, CIHI and its partners' plans include establishing more products and services that facilitate the adoption and implementation of the PHC EMR CS in addition to enacting strategies and plans for the longer-term governance and maintenance of the PHC EMR CS so that it remains clinically and technically relevant in the future.

CIHI as a research tool

CIHI uses data from governments and hospitals across Canada to determine comparative statistics and costing algorithms that are available for use by healthcare ministries, hospital boards and the general public. According to former CIHI president and CEO Richard Alvarez, CIHI's scope of research and data tracking is wide-ranging and broad. In a 2000 interview, Alvarez said of CIHI : "You name it, we track it," including subjects such as physician migration patterns, availability of nurses, supply and demand of organs, and survival rates for transplant patients. For example, in 2000 CIHI determined that the rate of caesarean births in different regions of the country varied from a low of 12% to a high of 28%. This CIHI generated information was then used by hospital boards to measure themselves against the national and international benchmark (15% in 2000).

A 2009 study in the journal Chronic Diseases in Canada compared perinatal information in the CIHI’s Discharge Abstract Database (DAD) with information found in a range a smaller clinically focused databases. According to findings of the researches, CIHI's DAD data compared favourably with the other databases and proved accurate for many of the diagnoses/procedures examined. The authors of the report concluded by supporting the use of the data in the CIHI DAD for national perinatal surveillance and research, with a caveat that appropriate inference rest on an understanding of clinical practice and the use of sensitivity analyses to identify robust findings.

The CIHI DAD is used to identify patients admitted for hip fracture surgery to any acute care hospital in Canada between 2003 and 2012 in the Canadian Collaborative Study of Hip Fractures.

Privacy and security

CIHI ensures the confidentiality, integrity and availability of its health information through a comprehensive and integrated privacy and security program. Its Privacy and Security Framework outlines how the organization approaches data governance, and maintains privacy and security protection. CIHI enacts numerous policies and practices to prohibit personal identification, one key policy being strict levels of data suppression.

In the past, some news media outlets have raised concerns about the safety of personal health records in large medical/science databases like CIHI. In 2001, a Toronto Star article expressed fears that large health information vendors like CIHI could potentially leak the private health information of Canadians. The article suggested that the identities of individuals who had abortions and profiles of the mentally ill could potentially be leaked from CIHI’s databases if proper security practices were not in place. The article also surmised that the greatest danger to patient and research subject privacy was the possibility of CIHI’s health information being compromised through involvement with commercial entities. However, the findings of a three-year review by the Information and Privacy Commissioner of Ontario (IPC) published in a 2008 report allayed some of these concerns and largely supported CIHI’s assertion that the organization's security policies, procedures and protocols ensure high standards of privacy protection. According to the report, the "IPC is satisfied that CIHI continues to have in place practices and procedures that sufficiently protect the privacy of individuals whose personal health information it receives and that sufficiently maintain the confidentiality of that information," and that as of October 31, 2008, the IPC was satisfied that CIHI met the requirements of the Personal Health Information Protection Act.

Since 2005, CIHI has maintained prescribed entity status under the Personal Health Information Protection Act (PHIPA). Prescribed entity status gives an organization access to personal health data from government health information custodians, without patient consent.