Federal Minister of Health, Mark Holland, rises during Question Period in the House of Commons on Parliament Hill in Ottawa on April 29.Sean Kilpatrick/The Canadian Press
The federal Health Minister has tabled legislation that he says will significantly improve how Canadians access their own health data.
Mark Holland introduced the Connected Care for Canadians Act in the House of Commons on Thursday, and said the bill will allow for health information to be accessed by patients and shared between health care providers when required.
Access to data saves lives, Mr. Holland said, and it is time to move past an “archaic and siloed approach” to managing and sharing patient information.
The bill includes a requirement that all IT companies providing digital health services adopt common standards and allow for secure information to be exchanged across various systems. It does not create a new platform or database of health information.
He told a news conference in Toronto that access to health data does not sound particularly important but it has the power to transform the health care system. He pointed to the story of the late Greg Price, a mechanical engineer who was diagnosed with cancer. Greg’s story was featured in a film called Falling Through the Cracks: Greg’s Story.
Greg’s sister, Teri Price, said Thursday that the family wanted to understand what happened in his case and it was investigated by the Health Quality Council of Alberta.
She said their family assumed that clinicians involved in Greg’s care “had full access to all of the information that they needed in order to make safe decisions.” But she said that through the course of the investigation, they learned that this was not the reality for the care team, nor was it for Greg.
Ms. Price said gaps in care that Greg experienced are also present in many other patient stories and often relate to access to information.
Health Canada says less than 40 per cent of Canadians report accessing some of their health information and that only 35 per cent of primary-care physicians are able to share patient information outside their practice.
The department said delayed access to personal health information causes harm to patients and can result in unnecessary or duplicated tests, longer waiting times and hospital stays and medication errors.
Kathleen Ross, the president of the Canadian Medical Association, said access to data is critically important and provides information needed to deliver care and empowers patients.
“We fully support the announcement that our government has made today as an important critical step in the right direction,” she said while speaking in Toronto at an event with Mr. Holland.
Dr. Ross said electronic medical records provide overwhelming amounts of data that are often presented in a disorganized way, making it difficult or even impossible to access and share. She said this increases the burden on health care providers and ultimately takes away valuable time that could be spent with patients.
Conservative health critic Stephen Ellis said in a Thursday statement that his party believes Canadians’ privacy and personal information must be protected and that it would review the government’s proposed legislation carefully.
NDP health critic Peter Julian said that his party agrees with the spirit of the legislation and also said it would closely look at it.
“Disputes over software licences would be a further barrier to patients getting timely care, and people shouldn’t have to wait because a company is protecting its profits over patient access,” Mr. Julian said, emphasizing that it is important to ensure people receive the best care in a timely manner.