Digital medical records and the right to opt out

On March 30, the Quebec government will start bringing in a system of electronic health records – nearly two years after it first promised they would be in use. Every Montreal resident registered with Quebec’s health-insurance plan will automatically be included in the new electronic database – unless they choose to opt out by filling out a refusal form.

If this is taking you by surprise, you are not alone. The Quebec government has not done a stellar job of informing the population of digitalization or what it could mean in terms of patient privacy.

The government has purchased advertising in The Gazette and other media in recent weeks, alerting Montrealers to newsletters being mailed out to households concerning electronic health records. However, many anglophones have been surprised – and justiably upset given the subject matter – to see that the mass mailings have been in French only, with instructions on how to get an English version. The government ads in The Gazette contain fine print saying that English-language versions are to be inserted into selected English-language media on certain dates, including The Gazette on Feb. 25, today.

English digital versions are available at www.dossierdesante.gouv.qc.ca – notably, the refusal form. Patients who decide to opt out of having their medical records put onto an electronic database will not be subject to sanctions, the government says. Refusal forms can also be requested by calling Services Québec at 514-644-4545 or 1-877-644-4545.

While people have every right to opt out of having an electronic health record, they should consider carefully what they stand to miss out on before taking that step. Electronic health records offer great advantages to both patients and health-care providers, whether in private offices, clinics, hospitals or pharmacies.

One of the most important advantages is appropriate care in emergency situations where doctors do not know anything about the medical histories of the sick or injured people suddenly brought in for treatment. A 2004 study found between 9,000 and 23,000 Canadians die every year in hospital after being given a drug that reacted badly with another medication no one knew they were taking. Access to an electronic health record could have prevented these deaths.

The amount of new health-care data generated every year in Canada is growing much faster than the ability to record it efficiently through paperwork. Duplication is another problem. It has been estimated that as many as 70 million medical tests a year in Canada are ordered after a first test has already been done.

Although the advantages of electronic medical records are undeniable, the possibility that records could be accessed by people who have no business knowing what’s in them is a big problem – one that has been holding up their wholesale adoption in Quebec.

Experience in other jurisdictions shows there is reason for concern. In the United States, there was a 97-per-cent increase in the number of health records breached from 2010 to 2011, according to a report by a U.S. company that assesses information-technology security, cited by the Canadian Medical Association Journal.

The CMAJ warned that Canadians are so concerned about privacy issues that a recent online survey of 1,002 Canadian patients showed “43.2 per cent have withheld or would withhold information from their health care provider because of privacy concerns, while 31.3 per cent of Canadian patients have or would postpone care over privacy concerns, and 42.9 per cent would seek care outside their communities for the same reason.”

The Quebec government acknowledges awareness of this trust problem. It promises that when a patient has consented to use of health information by authorized healthcare providers, consent specifically does not include sharing the information with anyone else, such as an employer or insurance provider.

Nor, says the government, can it be shared with a professional who gives expert opinions or verifies claims – for the workers’ compensation board, for example. And patients will have the right to know who has accessed their health records.

The government has the best intentions, but it has done a terrible job actively engaging the population on this issue – and not just in English. Having largely failed on the communications front, the government needs to work harder to reassure people about how safe their online medical records will be from people and organizations that have no right to see them.

And it should do so before the March 30 opting-out deadline.