Gail Mackean: Living for treatments or treatments to live

The birth of a child is supposed to be the beginning of a parent’s lifetime of joy. For Gail MacKean, the birth of her son marked the beginning of a life-long journey through Alberta’s healthcare system, a journey marred by confusion, fear and frustration. MacKean’s story is the story of a family left in fear for the life of a new-born son, and of a family adrift in a convoluted, complicated medical system that couldn’t communicate with itself. The job of making sure doctors had enough information to make the right decisions for her son fell on her, recalls MacKean. It meant repeating ‘Sam’s story’ to each provider, a frustrating exercise for a family trying to provide a ‘normal’ life for their son.

MacKean’s story, as well as many other similar tales, have resulted in vast improvements in the delivery of healthcare in Alberta. But many other stories have resulted in only frustration and pain.

“This is not about bashing health care providers. We have met many amazing professionals along the way, and ultimately our son is here and living his life because of their knowledge and dedication,” says MacKean, herself a healthcare researcher.

“I believe health professionals go into health care because they care about, and want to help, people. I have seen health professionals ‘work around’ the system to access services on behalf of my son and/or try and arrange appointments around things in my son’s life that were important to him. We have also had many negative experiences and many close calls.”

That is why healthcare stakeholders have teamed up with the O’Brien Institute for Public Health to launch the Imagine Project, an initiative that aims to put the patient at the centre of the healthcare system.

A long-term initiative with lofty goals, the process kicks off with the Imagine Project – A Patient-Centred System: Crucial Questions for Healthcare in Alberta, a symposium that will ask stakeholders in healthcare, academia, government, industry, and the community to imagine what a healthcare focused on patients, patients experience and patients outcome would look like and function.