What are the barriers to sensible public health data?
Welcome to Plugging the Gap (my email newsletter about Covid-19 and its economics). In case you don’t know me, I’m an economist and professor at the University of Toronto. I have written lots of books including, most recently, on Covid-19. You can follow me on Twitter (@joshgans) or subscribe to this email newsletter here. (I am also part of the CDL Rapid Screening Consortium. The views expressed here are my own and should not be taken as representing organisations I work for.)
I don’t think there is an area where the value of data is both so obvious and so underprovided as in public health. And it isn’t just the pandemic. Being able to run a health system — public or private — relies on having data on a patient’s history including vaccinations, treatments and the like. This is even beyond the value of such data in being able to monitor public health trends and appropriately analyse the impact of interventions. The benefit to cost ratio is so high that it stretches credulity to find reasons why it is so woefully done especially in some of the world’s richest countries.
This post isn’t going to provide answers. Suggested ones vary from too much concern about privacy, to political inaction, to fragmented national health systems, to under-funding, to an amazing amount of sheer incompetence. But if I was going to sum up the one thing that I believe is at the core of not getting all of that myriad of problems into a coherent solution it is this: no political leader has made it a priority that they will live or die on and, let’s face it, the citizens haven’t done that either.
A recent article in Macleans, highlights Canada’s woes during the pandemic. (Although I should note that it fails to acknowledge that many provinces in Canada did well — just not the ones with the most people). Interestingly, it starts at a point two decades ago where Canada tried to solve the problem and failed. But apart from listing the failures, it never quite gets to the critical question of why?
But it gets close. The key moment was SARS. Near as I can tell, if there is a single reason why countries located immediately west of the International Date Line do have effective public data management systems while the rest do not, it is because that was the quarter of the planet most impacted by SARS. If you face the precipice of having a pandemic, it turns out that grabs the attention of the citizenry and political leadership and one of the first things they do is make sure they have data systems.
Canada did not escape SARS and so had the same corraling of attention with a new Public Health Agency of Canada to push the whole thing. It drove towards a standardised platform for a decade, almost got there, and then failed. The Macleans article places weight on some public health agencies still relying on faxing data in 2020. Sadly, that is not far from the truth. If I so much as look at buying a vacuum cleaner on the internet, several companies are ‘on it’ and have no trouble following up wherever I go. They can’t quite tell whether I have bought one eventually (even from them!) but it does suggest there is a way to do these things. If we can have targeted advertising surely we can have good patient records.
There are countries that got their acts together. One that is distant from the International Date Line is Israel.
For weeks, Canadians have been casting their envious eyes to Israel, where more than half the country has been inoculated against COVID-19. Israel, less than a quarter the size of Canada, has administered nearly twice as many doses of the COVID-19 vaccine.
The Middle Eastern country has some innate advantages: It is small and centralized, and offered top dollar to ensure vaccines from Pfizer and Moderna would come fast, and in large volumes. But geography and money aren’t the reason why Israel is outpacing Canada by 10-to-one.
Israel has the vaccines because it has the data.
In its shrewd deal with Pfizer, Israel offered to turn the country into one giant clinical trial: Providing the vaccine manufacturer unprecedented large-scale visibility as to the vaccine’s efficacy. It’s all made possible because of the country’s state-of-the-art information technology and robust national vaccination database.
The rest of the world is currently benefiting from that incredibly granular information.
Canada could never have struck such a deal. Its health technology is, charitably, a decade out of date. It lacks the ability to adequately track infectious disease outbreaks, efficiently manage vaccine supply chains and storage, quickly administer doses, and monitor immunity and adverse reactions on a national basis.
They aren’t the only ones. Bhutan managed to move very quickly in recent weeks. Estonia has long had a national system of data collection that has been the envy of most. They are tracking Canada — a far wealthier country — in vaccinations. And whatever is happening in Chile is something I am looking forward to reading about.
What is the constraint on running with it and trying to get data right? If this year has taught me anything, it is that decision-making authority is fragmented and that the ability to challenge it and bring it together is very low. Too many different people have control over different slices of the problem. Indeed, reading between the lines of the Macleans article, the problem is that the decision-makers were brought together but not tied together. Once the going got tough, many just went.
This might suggest that the right way to get around this would be from the top down. Someone must seize control and just do it. But when a solution is “obvious” but hasn’t been done, I start to think that it isn’t that obvious at all.
Instead, the way to go is to start small. Rather than try and develop a system that “does it all” maybe something closer to a start-up mentality is needed. We need to focus and develop a system that does a limited thing. The pandemic is generating this all over the place. There are systems being developed to track vaccinations — even within an own vaccination facility or a pharmacy chain. At the CDL Rapid Screening Consortium, to ensure that we could tell whether people were being regularly screened, we needed a data system to do just that. But once you have a system that can tell whether one person did something yesterday and link that to whether they did that same something again tomorrow, you have what you need to build out one person doing many things over time. That is the problem that needs to be solved.
All this suggests that rather than having a “big bang” vision for a national public health data system, we need a “balanced growth” vision. As it turns out, believe it or not, the topic of my PhD thesis 25 plus years ago. There I was wondering how you could coordinate many decision-makers to go in the same direction. One way was to target them all at once and incentivise or wrestle them there. The other was to go with smaller groups and a plan for moving from one area to the next closest adjacent one. There were trade-offs for both. My point is that we have tried “big bang.” It is shiny, easy to understand and fragile. Why don’t we try a growth strategy instead with a leadership vision stretched out over a decade or more rather than intensely focussed within an election cycle?