By GILLIAN SLADE on August 29, 2019.
The family of a man who died in 2012 is advocating for a system that will give patients digital access to their health information.
Greg Price had been diagnosed with testicular cancer but the illness is considered one of the most treatable, if diagnosed early.
Three days after surgery he died from a blood clot and a report found that multiple delays in treatment factored into his death.
Greg’s father, David, and his sister Teri founded an organization called Greg’s Wings to improve patient outcomes through collaboration and innovation.
David says if Greg had all of the information there would have been an opportunity to impact his process through the system and potentially the ultimate outcome.
Greg’s Wings is partner and advocate for ACCESS 2022, a Health Canada initiative to ultimately see all Canadians accessing their health information online from the device of their choice.
“In Greg’s own case he was unaware of some of the things that were just sitting rather than progressing,” said David. “He would have been able to intervene sooner rather than just wait.”
It is a joint responsibility for physicians and patients to keep track of test results and the next stage, said David. In order for patients to fully engage in this they need the information. This information would include reports from specialists and perhaps recommendations for additional tests. Patients need that in order to be fully in the loop.
One of the challenges in a system like this is having computers that are compatible within the health system, doctors and providing secure access for patients.
“If we try and come at it from the point of view that everything that currently exists has to work in that medium then there are all kinds of hurdles,” said David. “There’s opportunities to look at what’s currently available, or soon to be available, that would make it easier as well.”
He says the information can be delivered to patients in a variety of formats as long as it is something they can access, keep and refer to.
“The patient in the journey is the only consistent member,” said Teri, noting it is crucial for everyone on the entire health-care team to have the health-care information.
Technology is improving rapidly and there will be big changes in the next five to 10 years whether health care is part of that or not, said Teri.
Reflecting on the financial cost of implementing such a system for patients, Teri points out there are innumerable health-care costs when the appropriate information is not shared.
When you visit a specialist or the emergency room the patient is generally asked whether a copy of the report should be sent to their family doctor. It is seldom that the patient is asked if they would like a copy.
Teri says there are some clinics offering this and the patient can always make the request.