I spoke in my last article about the need for a national, open, non-proprietary platform upon which to advance Canada’s digital health agenda. In that article I highlighted our federal agencies that have national jurisdiction and how national standards can be adopted provincially. This was illustrated by Canada’s first “app“ – ePrescribing.
In this article I will highlight one other key ingredient: that of a national data governance framework.
First, let’s look at why this is important.
Canada’s healthcare system is a matter of national pride. However, contrary to popular perceptions, our health system is lagging on key performance indicators as compared to other OECD nations. In the 2014 Commonwealth Fund International Survey, Canada ranked 10 of 11 overall, advancing only one ranking to 9th place in the 2017 report, as noted below. Canada remains in the bottom two in terms of access to care and continues to lag in measurable healthcare outcomes.
Data, and specifically personal health data, are critically integral to improving Canada’s standard of care.
Alongside the nation’s healthcare providers and researchers, who are among the best in the world, data is a cornerstone for a healthier Canada. Moreover, it is core to our ability to fuel innovation in the health and bioscience sectors. Without the ability to link, share, analyze and measure health data, even the very best people cannot achieve solid results and outcomes.
And without these same abilities, even the most innovative entrepreneurs and leaders cannot support a new digital health reality for Canada.
This is why Canada needs an overarching data governance model; one that incorporates how to use data in a way that builds trust, generates value, promotes respect, and promises security.
Data sharing vs. consumer concerns
On the one hand, data is a fundamental input into a digital health innovation economy. Without the collection, linking and sharing of personal health information, digital health simply does not exist. Data is also a core output of digital innovations. Collecting, aggregating, analyzing and sharing health data has the potential to inform policies and practices that benefit the health and wellbeing of patient populations and all Canadians.
On the other hand, citizens are concerned about how their health data is used. With complex and differing legal regimes relating to health data privacy, stakeholders are wary of sharing data with other stakeholders in the ecosystem. Data breaches and hacks have come to be expected. Lack of trust in the digital system from all quarters is a barrier to success.
The public view the safe stewardship and oversight of their personal health data to be the role of government even if technology solutions and services are delivered by private organizations. However, this does not mean government alone need be focused on responsible data governance. Indeed, stakeholders from private sector, healthcare providers, and health systems across Canada need to agree on what a responsible, accountable data governance system looks like.
Equipped with an approach that is accepted nation-wide, all jurisdictions could provide consistent transparency and foster innovation with agility, in their own way and at their own pace. The alternative: our fragmentation will mire innovation in independent assessments and disparate standards that will block integration and connectivity across the country. In short, the wings of Canadian health innovation will be clipped and economic progress will be impaired.
But why now?
The time is now to establish a data governance model that can guide myriad digital health activities, including burgeoning initiatives, such as:
- Mitigating adverse drug events and managing drug costs with ePrescribing
- Achieving improved health outcomes by leveraging primary care data that resides in EMRs
- Connecting community care to primary care to simplify patients journey through the health system
- Leveraging personal health records to ensure consistent health information can be made available to individuals and those in their circle of care
- Harnessing genomic data to guide and target individual treatment
A call to action: creating new conditions for success
Creating a vibrant health sector that can drive economic and healthcare improvement for all Canadians is, in many respects, an unprecedented opportunity: one that will require unprecedented cooperation, agility and action among private and public players.
Advancements in digital health technology, plus high citizen demand for digital healthcare stand in stark contrast to the reality of healthcare delivery. Patient and citizen demand is outstripping Canada’s ability to deliver. The country’s multiple provincial health systems, with their varied funding, procurement and governance models have slowed the pace of adopting and scaling innovations. And today, our health system continues to lag on key performance indicators as compared to other OECD nations.
The health IT sector needs to work in collaboration with government, the health system and other stakeholders to create new conditions for success. We can start with pan-Canadian agreement on what good data governance looks like, including ethical standards and oversight mechanisms that will give citizens and all stakeholders trust in the system.