In an ideal world, healthcare systems would be person-centred. Services would be designed around us and by us. Our “lifeflow” as patients and families would mesh with the “workflow” of providers and institutions. There would be one record per person – a digital one. As we move from home to care setting 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 one record. If systems are designed this way, data and data sharing would also be driven by the person or their proxy.
Our current reality is far from this ideal. A new report from the expert advisory group that is making recommendations for a Pan-Canadian Health Data Strategy gets to the heart of the problem.
Our existing system is provider-centric. Every provider has a record for each of their patients. And they guard their patient information carefully, sharing cautiously, not wanting to breach privacy laws. Our patient data is not even available to all providers in our circle of care which can lead to time lags in treatment and diagnosis, or at times, tragic consequences.
And as patients, we do not have ready access to our own health data. The limited information that is available to us is often in multiple hospital or other patient portals. Fragmenting our data like this does not support us to manage our own care or to share care responsibilities with family and friends.
This “data gap” became more obvious – and important – during the pandemic. Many of us assume our data is collected across local, regional, national and international bodies to produce reliable evidence about things like vaccine safety, priorities for vaccination roll-out, and how best to respond to emerging variants of concern.
Unfortunately, that’s not the case.
Each jurisdiction has their own way of doing things. They don’t all collect the same data in the same way at the same time. So pulling together a national or even provincial or territorial picture is not easy or quick. As a result, the advice and information provided to the public are not necessarily coherent or timely.
This is not what we need in the middle of a health crisis.
While Canada overall has done reasonably well during the pandemic, there are big variations across regions and provinces. COVID-19 hit some communities harder than others, particularly those with people earning lower incomes, with jobs that exposed them to risk of exposure and in housing where distancing was not an option.
Some health regions had clear data on where those most vulnerable to COVID-19 were located and where to target vaccines when the time came – but many did not. The success stories of the pandemic came from regions using robust health data to bring help where and when it was needed most.
COVID-19 makes it clear that governments rely on public trust. It’s important for us to trust governments or we are less likely to follow public health orders or to believe vaccine information.
It is equally important for governments to trust people. They need to 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 understand what is happening and what to do. This also means involving the public in policies about health data use.
Ultimately, we need to rethink – not rejig – how we manage and use health data. The Pan-Canadian Health Data Strategy report points out a need for a culture shift in health data use. Public input has to be part of the fuel for the transformation to person-centred health care and health data systems.
Kimberlyn McGrail is a professor in the UBC School of Population and Public Health 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 is especially interested in digital health and is a citizen member of the Expert Advisory Group for the Pan-Canadian Digital Health Strategy Initiative.