May 19 is the 10-year anniversary of my brother Greg’s death. Greg was a healthy, intelligent 31-year-old who had only told us of his potential diagnosis of testicular cancer days before. Our family was shocked and devastated.
A major factor in my brother’s early death was Canada’s poor health data infrastructure.
Greg and his various health providers didn’t have access to all his health information. A red flag for testicular cancer was in his electronic medical record at one clinic but wasn’t available to the walk-in clinic doctor Greg saw when he started having back pain. One of his doctors moved his practice, and the clinic didn’t have a process in place for follow-up. A specialist he was urgently referred to — via fax — was out of the office for an extended period and the referral sat there until Greg finally called the office.
We made a lot of dangerous assumptions about health care
When my family wanted to learn what happened so we could help prevent it from happening again, we asked questions about how common cases like Greg’s were. The system couldn’t provide what we thought was basic information. We asked for statistics on surgeries like Greg’s and the frequency of blood clots for the hospital, region, province and nationally — which didn’t seem like a big ask at the time — and learned the information doesn’t exist.
Since Greg’s death, we’ve learned a lot about health care and have realized that we made a lot of dangerous assumptions.
In the first year after Greg’s death, Dr. Ward Flemons and the team at the Health Quality Council of Alberta investigated what happened, releasing the Continuity of Patient Care Study. Five years later, we partnered again to produce the film, Falling Through the Cracks: Greg’s Story. To date, it has been screened more than 470 times and we’ve participated in almost every screening’s post-film discussion. These conversations have been an opportunity to deepen our understanding of health care and refine what we believe is crucially important for its future.
We have learned a few things that we believe are fundamental truths: We need a health system that holds patient safety as a real priority and that doesn’t harm patients, safe care should be provided by teams, teamwork requires information to make safe decisions; and we need a health system that uses information to continuously learn, improve and innovate.
Canada has an unacceptable level of harm
Everyone deserves safe care, yet Canada has an unacceptable level of harm. One in every 17 hospital stays results in at least one unintended harmful event — and that’s just hospital stays.
Harm impacts the entire care team. It’s not okay to put people in a position where a single mistake could result in patient harm. We need a system that enables health providers to do their best work, where they’re surrounded by a team that relies on each other, and where the whole team, including patients, have access to the information they need.
As Dr. Ewan Affleck puts it, “information is the currency of care.” Health information systems must be intentionally designed to enable teams to provide safe care by giving access to information whenever decisions are being made.
For patients to be engaged partners who participate in making decisions in their own care as contributing members of their team, they also need access to their information.
A recently released series of reports from the Pan-Canadian Health Data Strategy Expert Advisory Group honestly outlines the current problems in health information in the country and provide an actionable strategy to create the health-care system we need and deserve. They call for a learning health system that uses interoperable data standards and person-centred data architecture, with collaboration across health jurisdictions and stakeholders. This would create a robust health system based on data-supported insights and evidence-based decisions.
Bold collaboration is needed for success, and we all have a role to play.
Before Greg’s death, we assumed that health care, like other sectors, had evolved over time to adopt tools for effective communication and information sharing. We were wrong.
As citizens across Canada, we need to support the system changes and mindset shifts needed. This isn’t going to happen overnight. There isn’t a single sector, organization, or jurisdiction that can independently cause this change. Just as a team is required for patient care, we need collective action to prevent more people from falling through the cracks.
Teri Price is the Executive Director of Greg’s Wings Projects.