Cancer patients push for end to 30-day wait for access to test results

Cancer patients in Quebec are calling for changes to online health records, saying it takes way too long to see their results.

Some cancer patients in Quebec say the 30-day delay before test and imaging results appear on the Carnet Santé leaves them waiting even longer in an already stressful process, and they’re calling for changes to the digital health record.

Raymond Vles, who has been diagnosed with cancer twice and is in remission, is part of a patient committee with the Quebec Cancer Coalition trying to change the delay in having access to results.

“You wait to see the doctor, you wait for the diagnosis, you wait for your treatment to start. And then when your treatment, you wait till it’s over and you wait to see if it works. And so you’re you’re always waiting. And the 30-day delay just makes it worse,” he said.

Vles still has tests and regular checkups to make sure the cancer hasn’t returned.

He explained that Quebec is the only province in Canada where results aren’t available to patients immediately.

The Federation of Specialist Doctors (FMSQ) says it “believes that patients are entitled to access their results once they are available and final.”

However, the federation said it is concerned about the impact of receiving preliminary results without a proper interpretation and appropriate medical follow-up.

According to the federation, it had requested a meeting with the Health Ministry but did not receive a response.

In an email, the Health Ministry said it began to study the issue a few years ago and found that the rules for health records in other provinces vary, and so do the views of organizations in the medical community.

“The ministry’s concern remains no one should learn from the Carnet Santé news or information that should be communicated by a health-care professional with all the necessary support.”

Vles points out that looking at the health record is optional and says many, like him, have learned to read the results.

“If you know your cancer is stable it takes off the stress, and if there is something that is not good news in a test report, you have time to think about it, get over the emotional shock and then you can prepare your questions for the doctor and have a much better conversation and be a real partner in your care.”

In the meantime, committee members want specialists and the ministry to sit down with them to look at possible solutions.