Cancer information “elusive”

Two years after starting a quest for information into her mother's death Madeleine Redfern has finally seen her mother's medical records.

But it took numerous phone calls and faxes, a letter to the Nunavut Minister of Health, a story in Nunatsiaq News, and payment of a $40 fee.

"It seems that going to the minister and getting media coverage finally got this ball rolling," Redfern said in an email.

After getting no reply to two years of phone calls and faxes seeking her mother's medical records, Redfern wrote a letter to Nunavut's Minister of Health and Social Services Tagak Curley.

She also approached this newspaper (see story, May 1).

Then, in early May, she received a written response from HSS deputy minister Alex Campbell saying her records had been found and were available for her to copy.

The cost, she said, was a $35 flat fee, plus $1 a page for the five pages she ended up photocopying.

Unfortunately, she added that after perusing the records, she is not much further ahead in her quest to find out whether her mother died of ovarian or cervical cancer.

The only information Redfern said she could find was that her mother, who passed away 19 years ago, "died of pneumonia and metastasis cancer with primary unknown."

She did find a note among the records showing a doctor had asked "that more tests to be done… to determine whether ovarian cancer could be the primary."

"But I didn't see in the records whether this test was in fact done – let alone the results."

The information is vital to Redfern and her sister, Ooleepeeka Shoo, because women can inherit a genetic predisposition to ovarian cancer, whereas that does not appear to be the case with cervical cancer.

Their doctors want to know whether the sisters should be considered at increased risk for ovarian cancer, so they can monitor the women appropriately.

Redfern expects her doctor will be able to make more sense of the records than she could.

She asked the person in charge of the records "not to put my mother's file away, so that I can make a doctor's appointment and have the doctor review my mother's file," she said.

Pam Coulter, a communications officer with Health and Social Services, told Nunatsiaq News that sharing medical records is a delicate activity that requires the department to balance both the right of access to information with the protection of individual privacy.

Under both the Hospital Standards Regulations and the Access to Information and Protection of Privacy Act, she said, next of kin are indeed allowed access to the medical records of deceased relatives.

To obtain a copy of deceased family member's medical records, you have to:

• contact your local health centre or hospital;
• fill out a request for medical information form; and
• provide proof of your relationship.

"What I find interesting," Redfern said, "is that I did contact the right person at the Baffin Regional Hospital (now Qikiqtani General Hospital) and did what I was told to do, which was to fax in my written request."

"I was never told about a ‘form' or provided such," she added, "let alone told to provide proof of relationship."