“Know your numbers” is a common admonition for patients with conditions such as heart disease, diabetes and prostate cancer. Tracking your blood pressure, hemoglobin A1C or prostate-specific antigen is a practical way of monitoring your health and preventing complications.
“Know your numbers” is also pretty sound advice for clinicians, institutions and health systems writ large. If you don’t track the needs of patients, the way they are treated and their outcomes, it’s hard to imagine how you can provide effective or cost-efficient care.
Yet, as an important new Globe and Mail series underscores, access to data is abysmal in Canada. And nowhere is the data gap more glaring and more harmful than in our publicly-funded health care system.
We do a much better job of tracking how we die than how we live.
For example, we don’t have a good handle on how many children have been vaccinated and, more importantly, where those who have not been vaccinated live and go to school. We know a lot of people are waiting for a spot in nursing homes and long-term care homes, but we don’t really know how many people are living in those facilities currently, whether they need to be there, and whether they are getting appropriate care.
Heck, we don’t even have commonly accepted terminology: Around the country these residential care facilities have names such as lodges, assisted living, supportive housing, personal care homes, nursing homes and long-term care facilities.
If you don’t know the numbers, or if the numbers are not comparable, you can’t implement sound public policies. With the era of Big Data looming large, Canada’s health care data gap risks becoming a deadly chasm.
Big Data is a popular buzzword but what it means, quite simply, is using large data sets to reveal patterns, trends and associations, and then using the information for policy purposes. This sort of predictive analysis should improve access, reduce harm, and cut costs.
For example, hospitals in Paris used a decade’s worth of admission records to create an algorithm that makes daily and hourly predictions of how many patients are expected at each hospital, and staffing is adjusted accordingly to avoid long waits and overcrowding.
Big Data is also expected to revolutionize how we treat conditions such as cancer. Currently, there are recommendations and guidelines for how to treat patients with various sorts of cancer, based largely on clinical trials.
What is lacking is a robust feedback loop. If you can track exactly how each patient is treated – what type of surgery, the chemotherapy drugs, the symptoms, and the recovery times – the data can be used to refine treatment protocols for future patients.
Data tracking is desperately needed in the drug field; last year, Canadians spent $33.7-billion on prescription drugs but we know very little about the effectiveness of those prescriptions.
In the (hopefully-not-too-distant) future, data will be used to drive value-based health care – meaning that providers are paid for outcomes. For example, a drug company would be compensated only if their new drug to cure hepatitis C actually works. The goal of new technology is to produce better outcomes. But these advances are predicated on having good data.
Canada has excellent data-collection agencies in the health field: the Canadian Institute for Health Information, the Institute for Clinical Evaluative Sciences, the BC Centre for Disease Control, and the Manitoba Centre for Health Policy, to name just a few.
But these groups too often have to operate with one hand tied behind their backs because of poor integration of data collection into clinical work, lack of national standards, sub-standard information systems in the provinces, and miserly funding.
In Canada, we also have an unhealthy obsession with privacy. Of course, individual health data should be private and secure. But now, more than ever, collecting data is important not only to our individual health, but to the health of others, so it is essential that we distinguish between privacy and secrecy.
The explosion in data has medical, ethical, legal and policy implications. But a publicly-funded system, if it is going to be patient-centered, has to embrace transparency.
Our disdain for data is actually disdain for patients.
It is also one of the main reasons Canada’s health system ranks poorly in terms of equity, accessibility and cost-efficiency. We need to know our numbers, but must also act on them.