TORONTO - As Donna Hammill-Chalk undergoes treatment for breast cancer, she can log onto the website at Sunnybrook Health Sciences Centre in Toronto, type in a username and secure password, and gain access to her medical records.
In Prince Edward Island, her mother, who was diagnosed with breast cancer in December, doesn't have electronic records - but if they existed, it would be easier for her to share updates on her condition and treatment with her four grown children living in different parts of the world.
"Cancer - you lose all control and you can get some control back by having access to your information," Hammill-Chalk said in an interview Wednesday from her home in Markham, Ont., where she is recovering from a mastectomy.
"I think in this day and age, patients need to take ownership and accountability for managing their own care. And you can't do that if you don't have the information."
She tells her story in a report card on cancer, released by the Cancer Advocacy Coalition of Canada. The report also calls for more funding for cancer drugs, bans everywhere on smoking in cars with kids and more genetic testing so treatments can be targeted to those who will benefit.
Dr. Pierre Major, chair of the report card committee, said the electronic records system at Sunnybrook, known at MyChart, is the only one he's aware of that's available to cancer patients in Canada.
Physicians there have told him they're happy with it, he said.
"It's great because patients look up in their chart what the results are, and it saves phone calls. The patients are happy because they can access their results or even change their appointments."
It's something that Marlene Nicholson, who lives in Bedford, N.S., can only wish for as she helps her mother navigate the health-care system. She's Hammill-Chalk's sister, and has made the three-hour drive to Lower Freetown, P.E.I., on numerous occasions in recent months to support their 69-year-old mom, Margaret Hammill, during her medical appointments.
With one sister in Ontario, another in Bahrain, and a brother in California, she has to relay a lot of information, Nicholson said.
"When the siblings are at a distance, yes, it would be great to be able to just say 'OK, go here' or 'Mom has a password' or whatever it takes, or if we could send a file ... everybody can have access to it."
It would also be handy for recalling and checking on details, she indicated.
"The surgeon and the receptionist were all on March Break last week, and this is when I was trying to make sure this oncologist had the hormone test results ... I had to make two or three phone calls just to make sure everybody knew what was going on," she said.
Major notes that cancer patients are often overwhelmed with information at their first appointments, and electronic records are useful for going back and reading details at their leisure.
There are savings for the health-care system as well, he said.
"Studies done in the United States in several areas show you can trim your health-care costs by five to six per cent."
In terms of cost savings in other areas of cancer care, Major also urged officials to try to find ways to get some of the new and expensive cancer drugs funded in Canada.
"We have to find a way to get the best deal, to make use of our purchasing power as provinces, maybe as a country, to get the best cost for those new medicines," he said.
As well, he said Canadians should have access to a 21-gene assay, a test introduced in the United States in 2007 that allows doctors to identify patients with breast cancer who are at high or low risk of the disease returning.
"If you apply this test in a general way, you will identify those patients who have a very, very low risk of the cancer returning, and who do not benefit from chemotherapy," he said.
"So if you do implement this testing you can save patients the unnecessary toxicities of treatment, and you actually will save costs to the system by not delivering chemotherapy that's not necessary."
On another matter, the coalition pointed out the discrepancy between drug coverage for elected representatives and government employees, compared to seniors and others with drug coverage from public plans.
"We think that's a discrepancy that has to be corrected," he said.
As for secondhand smoke, the report notes that six provinces and one territory have adopted laws to ban smoking in cars with children, and it invites the other jurisdictions to climb on board.