ARCHIVED - Electronic Health Information and Privacy Survey: What Canadians Think - 2007

Executive Summary

August 2007

Prepared for Health Canada by Ekos Research Associates. The full report (PDF Version - 551 K) is available on the Library and Archives Canada Web site.

Table of Contents

• Broad Perceptions of Personal Health Information
• Safety and Security of Personal Health Information
• Protection of Personal Health Information
• Support for EHRs
• The EHR and Comfort Levels
• Secondary Use of Health Information

The Advisory Council on Health Infostructure identified the Electronic Health Record (EHR) - a health record of an individual that is accessible online from many separate, interoperable automated systems within a secure electronic network - to be of pivotal importance to an integrated health care delivery system.

Canada Health Infoway, Health Canada, and the Office of the Privacy Commissioner of Canada have co-sponsored the current research to explore Canadian attitudes towards electronic health information and their privacy. More specifically, the survey sought to examine Canadians' expectations related to the privacy, confidentiality and security of personal health information, balanced with health care considerations (e.g., use, quality, and access).

Each organization has conducted previous research with the general public on these types of issues:

• 2003, Canada Health Infoway Public Attitudes to Electronic Health Records and its Linkages
• 2004, Health Canada Pan-Canadian Health Information Privacy and Confidentiality Framework
• 2007, The Office of the Privacy Commissioner of Canada Canadians and the Privacy Landscape.

EKOS Research Associates was commissioned by the sponsors to build on the previous public opinion research to both assess how certain trends are evolving as well as contribute to the development of new knowledge and understanding on these topics.

The objectives of the current study are to measure the following:

• perceptions of personal privacy and privacy of personal health information;
• awareness of laws / oversight bodies in relation to personal health information;
• perceptions and experiences related to electronic health information;
• secondary use of electronic health information; and
• the public's level of trust, comfort and tolerance for the electronic health record.

The results of this study are based on a 20-minute telephone survey with a random sample of 2,469 Canadians, aged 16 years and older. Surveying on the study was undertaken between June 22nd and July 19th, 2007. Key findings of this research are discussed below and throughout the remainder of this report.

Broad Perceptions of Personal Health Information

Canadians increasingly see it as important for health care providers to have easy access to patient information for the delivery of health care.

• Close to nine in ten (87 per cent) increasingly agrees that timely and easy access to personal health information is integral to the provision of quality health care.
• At least one in two Canadians is also concerned about serious mistakes in diagnoses or treatment due to incomplete, inaccurate, or illegible patient information.
• Hand in hand with these views is the enormous premium Canadians place on the necessity for safeguards to be in place to protect their health information. We find strong (and modestly rising) agreement with the perception that there are few types of personal information which are more important to protect than personal health information.

Safety and Security of Personal Health Information

Canadians have strong concerns about the safety and security of their personal health information (defined as at the broadest level) but reasonable confidence that responsible stewardship of personal health data is in place (e.g., 79 per cent considers the health information that exists about them to be at least moderately safe / secure).

Further, there is little evidence that the public expect improper use by those collecting or holding personal health information.

• Trust in health professionals (e.g., doctors, nurses, pharmacists) is very high; but slightly lower for other groups (e.g., administrators, government departments).
• Trust levels are more mixed outside the realm of immediate health care providers (e.g., computer technicians, insurance companies, researchers).

Protection of Personal Health Information

Confidence in the protection of health information is mixed, but significantly higher than confidence in protection of personal information in general (i.e. while 37 per cent feel they have less protection of their health information than five years ago, 53 per cent feel this way about their personal information in general).

• We find very small numbers (four per cent) reporting their health information having been used inappropriately or without their consent.

Direct awareness of oversight is modest.

• Two in five (39 per cent) have clear / vague awareness of laws; it is likely that many more believe that such protection is in place.
• Recognition of the existence of protective agencies is very low (76 per cent "no awareness"), which is a fairly typical finding.
• Awareness relates more to privacy protection in general, than to protection of personal health information specifically (e.g., Privacy Act and Canada's Privacy Commissioner are the most top-of-mind).
• Clear awareness of laws that protect personal health information is highest in Alberta and lowest in Quebec.
• Importantly, Canadians who have interacted with an electronic health information system have a greater awareness of legislation and institutions intended to protect this information.

While Canadians enthusiasm for privacy laws may be high, overall low levels of familiarity with legislation in this area suggests that many may not be aware of their rights when it comes to the protection of their health information. Moreover, even if they are aware of their rights, it seems that few would know where to turn if they ever experienced a violation of their personal health information.

Support for EHRs

Awareness and support for EHRs is on the rise.

• Nearly one in two Canadians (49 per cent) has heard of EHRs (up eight per cent since 2003) and one in three (31 per cent) has interacted with this type of system.
• Assessments of interactions with EHRs lean strongly positive (e.g., faster service, information more accessible). Among those who have interacted with an EHR, top-of-mind assessments lean strongly towards the positive.
• Close to nine in ten Canadians (88 per cent) support the development of EHRs (up five percentage points since 2003).
• Access to patient information and improved efficiency remain the most compelling reasons to support EHRs, whereas concerns about security lead reasons for opposing.

EHRs are seen as increasingly superior to the paper-based system.

• More than eight in ten Canadians rate EHRs as better than paper-based systems in terms of their effectiveness for doctors, pharmacists, patients, and nurses. A smaller majority (53 per cent) also believes EHRs to be less costly.
• When it comes to the privacy / security of patient information, those seeing EHRs as better than a paper-based system outnumber those who see EHRs as worse by a margin of over two to one.
• Interestingly, those with firsthand experience with EHRs (31 per cent of Canadians) are more likely to see the benefits of this type of system for patients and health care providers. In a top-of-mind assessment of EHRs - beyond a predominantly positive impression - these patients spontaneously cite faster service and accessibility of information as benefits.

Arguments in favour of EHRs are all strong and strengthening, while arguments against this type of system are weaker than in 2003. At least eight in ten Canadians agree with all the arguments in favour (e.g., improved access to and better information, more rapid diagnosis, etc.).

Canadians' overall level of comfort with EHRs is strong and continues to rise. Importantly, those who have interacted with an electronic health information system report higher levels of comfort with EHRs.

The EHR and Comfort Levels

Concerns about EHRs are more limited (i.e. fewer than half agrees with arguments against EHRs). When there are concerns, the idea that personal health information could somehow be compromised predominates. For example, pluralities agree that they worry that their information could be accessed for malicious or mischievous reasons (45 per cent) or that it could be used for purposes not related to their health (42 per cent). Over one in three (37 per cent) also worries that privacy and security procedures will not be followed by those with access to their records.

There exists a host of potential initiatives that could be introduced as a way of increasing the general public's comfort with this technology.

• Having the ability to find out who accessed your health record and when tops the list of ways to increase comfort levels (77 per cent say this would make them "more comfortable").
• This is followed closely by introducing new legislation that would make unauthorized access of personal health records a serious criminal offence (74 per cent say this would make them "more comfortable"). It is worth reiterating that most Canadians are not aware of the privacy legislation that currently exists.

A range of other options are also seen as effective:

• Privacy assurances. The option of being informed of any privacy or security breaches is new to the list this year and ranks third overall, with seven in ten (70 per cent) Canadians saying this would make them "more comfortable". The other new item on the list - having procedures to respond to such breaches - would make two-thirds of Canadians (68 per cent) "more comfortable". Likewise, two in three (66 per cent) also say that a clear and accessible privacy policy on how this information is to be handled would make them "more comfortable".
• Access to records. Another way of increasing comfort levels would be to allow Canadians to access their health record at any time in order to make any necessary corrections (68 per cent "more comfortable"). A majority (55 per cent) would also like to be able to hide or mask sensitive information.
• Endorsements. Knowing that their doctor supported a system of EHRs would make two in three Canadians (66 per cent) "more comfortable" with the technology. Other forms of endorsement (i.e. from the federal, provincial or territorial governments) would also increase feelings of comfort for about one in two (49 per cent for the federal government and 45 per cent for the provincial or territorial governments).
• Oversight. The idea that the entire system would be evaluated or audited after a period of time would also make about one in two (54 per cent) "more comfortable" with EHRs.

Of note, support for any of the aforementioned initiatives is generally somewhat stronger among the 31 per cent of Canadians who reported that they have interacted with an electronic health information system in the past year.

Secondary Use of Health Information

Health research is another area in which electronic health information could potentially be put to use. More than eight in ten Canadians (84 per cent) support the use of EHRs in such research, provided that details such as their name and address are not known to the researcher. This finding is particularly impressive as it mirrors overall support for the EHR (88 per cent). Support for the use of EHRs in health research drops dramatically, however, if personal details are not removed from the record (50 per cent). If consent is obtained ahead of time, there also exists support for the health researchers to link personal health information to other records that may be related to health outcomes (e.g., education, income), but this is considerably more tepid than overall support for EHRs (66 per cent).

At least three in four says they would be comfortable with EHRs being used to anticipate health crises, or to monitor / evaluate or prevent improper uses of the health care system.

One volunteered quote from a survey respondent perhaps encapsulated the essence of the majority view on these issues: "If you can protect my privacy, I am okay with [electronic health records]."