Privacy Legislation and the Right to Know: A Manitoba Couple Helps the Province Clean Up its Act, Part I
People from countries around the world gathered in Sofia, Bulgaria in 2002 to advocate for the right of individuals to access information held by government and for greater government transparency. Their efforts are now internationally recognized on Right to Know Day held annually on September 28th.
Canada is celebrating Right to Know Day as part of a Right to Know Week from September 27th to October 1st, 2010. A number of events are planned to help raise public awareness about the federal, provincial and territorial privacy legislation protecting the personal information of Canadians and the right to access information held by government agencies.
Manitoba was the first province to develop privacy and access laws pertaining to personal health information. When The Personal Health Information Act (PHIA) came into effect in 1997 it was considered by many to be a leading example for other provinces and territories.
Mimi Raglan and her husband Blake Taylor of Winnipeg, Manitoba would learn firsthand about privacy legislation and the issues surrounding access to personal health information in a government-run health care system.
Mimi’s mother Frances, an elderly cancer patient, enjoyed a nice Thanksgiving dinner with her family in October 2001 before entering the hospital the next day to seek treatment for some ulcers on her ankles. She was part of the palliative home care program run by the hospital which enabled patients to seek intermittent care when needed and then return to the comfort of their home.
This hospital stay was different for Frances. Her condition quickly deteriorated. Mimi, witnessing what she felt was poor nursing care and sporadic attendance by doctors, began to question her mother’s care. She made several requests to view a copy of Frances’ health care record. These requests were denied by nursing staff and the Patient Care Manager refused the requests citing PHIA, Manitoba’s health information privacy law.
During her 18-day visit, Frances suffered an in-hospital head injury and acquired additional infections futher complicating her medical condition and ultimately contributing to her death on October 26th. A copy of her health care record was finally made available to the family through her son who was able to receive a copy as executor of his mother’s will. Much of the information contained in the record had never been communicated to the family including the types of medications prescribed for Frances and the fact that on admission she had been placed, without her knowledge, on a care plan for the actively dying. Mimi also noted a number of errors in the records and a significant medication error in the death summary.
Mimi believes that had her family been allowed to see the health care record while Frances was alive, the communication errors by hospital staff would have been rectified and her mother’s care would have greatly improved. Mimi and Blake began to search for answers to the questions surrounding Frances’ medical care and the handling of her case. They decided early on to advocate for changes that would help other patients and their families avoid similar experiences in the health care system. For Mimi, it meant changing the piece of legislation used to prevent her family from accessing their mother’s health care record. At the time, she and Blake had no idea this endeavor would last eight years.
To be continued…