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Making Health Data Public Would Give Canada's Economy A Leg Up

Subject to individuals' right to opt out, all health data generated as a result of public spending should be made publicly available at zero or low cost.
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Move over, knowledge-based economy. Hello data-driven economy.

Canadians are sleepwalking into a new reality, one that has been exploited successfully by today's mega firms — Google, Facebook, Amazon, Uber and others — for more than a decade. For most, if not all, commercial firms, data is the critical capital input to tomorrow's economy.

Innovators and start-ups can develop new intellectual property (IP), but cannot compete on an access-to-data basis with these mega firms. Given their headstart in the data-driven economy, mega firms' deep pockets enable aggressive take-out strategies that eliminate future competition.

There is one sector where these mega firms do not have a data monopoly: health care.

This presents a unique opportunity for Canada.

The benefits to adopting a more data-driven approach to health care are clear: increasing the operational efficiency of care, better monitoring of emerging trends, improved clinical decision making and delivery of effective personalized medicine, among others.

But health care is also unique, because unlocking the potential value of data will depend on the implementation of new policies, standards and technologies to facilitate open, structured and secure data sharing within a regulatory framework that protects individual rights.

This presents a unique opportunity for Canada. While Canadian industry lags behind its southern neighbour in the first generation of industries in the data-driven economy (search, self-driving vehicles, social networks, etc.), we have a structural competitive advantage in health care.

Health care is the largest sector of the Canadian economy, representing over 11 per cent of the country's GDP, of which 70 per cent is funded through its public health-care system. This fundamentally single-payer structure creates an effective mechanism to advance a collective health-data economy due to the centralized ability to advance national standards for data collection, accelerate innovation and drive policy standards. Not to mention the expansive data collection potential across the genetic, cultural and socio-economic variety of the country.

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Canada can capitalize on its strategic position to make this a reality in health care through a thoughtful exercise pertaining to regulations and purchasing power.

First, use federal and provincial health purchasing power to unlock health data for the benefit of all. Subject to individuals having the right to opt out, all health data generated as a result of public spending should be made publicly available in an anonymized fashion at zero or nominal cost.

Next, a rules-based access framework must be created for this data. Firms must demonstrate the ability to securely manage data, perhaps through certification or contractual means. Central to this the fact is understanding that certain uses of health care data compromise trust in disproportion to their benefit. Access should always be subject to regulations that limit certain behaviour. These may include banning the re-identification of individuals using anonymized data and limiting the use of data for activities such as marketing.

Access to this data should follow the principle of benefit to Canadian society.

This data should be retained for lifetimes or longer. Data, unlike a traditional commodity such as oil, increases in value as it becomes more abundant. As machine learning matures, previous stores of data will prove valuable in solving problems and yielding potentially life-saving insights.

We can also accelerate the development of health data standards, and require that publicly procured technologies conform or adjust to them. To accomplish this, the Health Standards Organization and the Standards Council of Canada should be empowered to continuously develop and refine standards.

And, finally, access to this data should follow the principle of benefit to Canadian society. Canadian firms, or firms that provide access to their own data, should gain the greatest benefit. This may lead to variable pricing for access (low for domestic firms and higher for foreign firms).

I recognize that an important overlay on this discussion is that of intellectual property rights. In health care, while data belongs to the individual, and the state can create rules of access for secondary use, the state should not own the IP generated therefrom. Instead, the protection of algorithms created from this data should be incentivized, perhaps using the innovation box or patent box approaches that are deployed in other countries.

To date, Canada has been an observer and rent payer in the data-driven economy. However, in health care, Canada has a clear opportunity to stake out a leadership position. Those who own the largest parts of the medical information life cycle, from data capture to insight to machine algorithms, or those who can access it in order to innovate, will be the economic winners.

The future of health care delivery will be data-driven, scientific and increasingly personalized. Eventually, the accumulation of data will shift health care from reactive to preventative; adjusting our behaviour, our biome and perhaps even our genome. We can act now, lead in our collective interest and create the foundation to develop world-class data-driven innovations, or we can let this opportunity pass us by and continue to pay rent for our own health data.

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