In an ideal world, health systems would be people-centered. The services would be designed around and by us. Our “life flow” as patients and families would fit into the “work flow” of providers and institutions. There would be one recording per person – one digital recording.
As we move from home to place of care and from provider to provider, our data would flow seamlessly with us like a second skin. No need to repeat information. New data would be added to our only record. If the systems are designed this way, data and data sharing would also be driven by the individual or their proxy.
Our current reality is far from this ideal. A new report from the expert advisory group making recommendations for a pan-Canadian health data strategy gets to the heart of the matter.
Our existing system is supplier centric. Each provider has a file for each of their patients. And they carefully guard their patient’s information, sharing it with caution, not wanting to violate privacy laws. Our patient data is not even available to all providers in our circle of care, which can lead to delays in treatment and diagnosis, or sometimes tragic consequences.
And as patients, we don’t have easy access to our own health data. The limited information we have is often found in multiple hospitals or other patient portals. Fragmenting our data in this way does not help us manage our own care or share care responsibilities with family and friends.
This “data gap” became more evident – and significant – during the pandemic. Many of us assume that our data is collected from local, regional, national and international agencies to produce reliable evidence on things such as vaccine safety, priorities for immunization deployment, and how best to respond to emerging variants of concern.
Unfortunately, it is not the case.
Each jurisdiction has its own way of doing things. They do not all collect the same data in the same way at the same time. It is therefore neither easy nor quick to draw a national, even provincial or territorial portrait. Therefore, the advice and information provided to the public is not necessarily consistent or timely.
This is not what we need in the midst of a health crisis.
While Canada has generally performed well during the pandemic, there are large variations between regions and provinces. COVID-19 has hit some communities harder than others, especially those with lower incomes, with jobs that put them at risk of exposure and in housing where distancing was not an option.
Some health regions had clear data on where people most vulnerable to COVID-19 were and where to target vaccines when the time came – but many did not. The successes of the pandemic have come from regions using strong health data to provide help where and when it is needed most.
COVID-19 makes it clear that governments rely on the trust of the public. It is important for us to trust governments, or we are less likely to follow public health orders or believe information about vaccines.
Equally important is that governments trust people. They must trust us by providing clear and complete information. And to trust us to act for the good of the community. Most Canadians want to be proactive in the face of a crisis; we just need to figure out what’s going on and what to do. It also means involving the public in policies for the use of health data.
Ultimately, we need to rethink – not redefine – the way we manage and use health data. The Pan-Canadian Health Data Strategy report highlights the need for a culture change in the use of health data. The contribution of the public must be part of the fuel of the transformation towards people-centered health care and health data systems.
Kimberlyn McGrail is Professor in the School of Population and Public Health at UBC and Scientific Director of Health Data Research Network Canada. She is a member of the Expert Advisory Group for the Pan-Canadian Health Data Strategy.
Alies Maybee collaborates as a patient partner in many aspects of healthcare. As a former technologist, she has a particular interest in digital health and is a citizen member of the Expert Advisory Group of the Pan-Canadian Digital Health Strategy Initiative.