Governments across Canada envision that all health records of Canadians will one day be merged and available solely in electronic form. Every individual will have an Electronic Health Record (EHR), potentially enabling government tracking throughout her life, throughout the country. And part or all of the individual’s EHR will be readable by anyone who has been given authorization to access that part of the system.

In order to support and promote the development of a pan-Canadian interoperable health records system, the government of Canada has created an independent, not-for-profit corporation to develop national standards and distribute billions of dollars of funding to the provinces. “Interoperable” essentially means that the computer software will be compatible so that, where permitted by law and policy, information can flow across provincial boundaries and through the whole system.

Examples of Provincial Developments

In BC there is a great deal of work being done to create an “e-Health system” of integrated computerized records of all your contacts with the health system, including your visits to your doctor, your lab tests, diagnostic imaging tests (such as MRIs); your prescriptions and your hospital visits. There is also a new law, the E-Health Act, which permits the BC government to create large databases of health information – and this new law legalizes the work being done to create the “e-Health system.” The BC e-Health system and the E-Health Act are discussed in detail later in this section.

In Alberta, new amendments to the Health Information Act have been proposed, including making it an offence in certain circumstances for custodians to refuse to share health information via Alberta Netcare, a province-wide electronic health records system. The amendments radically reduce the privacy rights of Albertans in their personal health information almost to zero. The amendments were before the Alberta Standing Committee on Health on January 21, 2009.

In Ontario, certain core systems were to be in place by 2012, but delays resulted in the closure and replacement of the agency developing Ontario`s EHR system. The new agency will be continuing to develop a diagnostic imaging system; a public health surveillance system; a client registry; a provider registry; and a laboratory information system. The interoperable electronic health record is partially completed but the final completion date for the whole system has been extended to 2015. *

The other provinces and the territories also have electronic health records systems in various stages of development.

Thus public policy across Canada is already shaping up so that interoperable electronic health records systems will be the default form of personal health information storage, and sharing inside provincial systems will be automatic or required by law, rendering individual consent and control mostly irrelevant.

Infoway – The EHR National Funding Body

The Government of Canada invested $500 million in 2004 in an independent not-for-profit corporation called Canada Health Infoway, mandated to accelerate the development and adoption of information technology systems such as electronic patient records. The goal is to develop an interoperable, pan-Canadian electronic health records system, which can enable the accessing and sharing of personal health information across the country. The purposes for this system include providing health care to individuals, but also making more health information available for a wide variety of secondary purposes in the health care system, including system management, administration and cost control, research, public health tracking and quality control.

It appears that it is currently the intention of Infoway to ensure that some of the health information used for secondary purposes is anonymous, but privacy advocates argue that this will not always be the case.

Between $1.2 and $1.5 billion has been allocated to Infoway by the federal government since 2004. It uses these funds to strategically invest in provincial and territorial Electronic Health Record initiatives. Infoway’s original goal of ensuring that 50% of the Canadian population would have an Electronic Health Record by 2010 will not be met, although many provinces are on track to hit some of their targets. The funding provides 75 per cent of the cost of the project (with the province funding the remainder) and is tied to the project meeting specified implementation targets. Infoway provides strategic direction, technical expertise and standards, and monitors the projects to ensure that costs are contained.

Although Infoway is funded by the federal government it is not subject to the Access to Information Act, which gives citizens a right to see information held by government bodies. Thus there are no external checks on how the funding decisions are made. The only way for citizens to scrutinize the research or other information on which Infoway bases its decisions is to review the information Infoway chooses to make publicly available on Infoway’s website.

* Canada Health Infoway, Electronic Health Records: Transforming health care, improving lives, Corporate Business Plan 2007-08, p. 17