The180·The 180

Make Canadian health care better: unleash the data

Governments in Canada collect all sorts of data about the health care system, but most of it is not available to patients. Emily Nicholas says it's time for that to change. The patient adviser says we'd all get more out of the system if we knew more about it.
Canadians don't have access to much of the data that's collected about the health care system. Patient adviser Emily Nicholas argues that should change. (Philippe Merle/AFP/Getty Images)

If you're contemplating which restaurant to go to on date night, you may turn to a crowdsourcing website (like Yelp!) to help you make your decision.

And here in Canada, if you want to find out information about a GP or a specialist, your options are about the same. That's despite the fact that the government already collects a whole bunch of information that could help you make a more informed decision.

This is what Emily Nicholas calls the Canadian health care paradox.

Nicholas is a patient adviser with health care organizations across Canada. She says we could get a lot more out of the system if we unleashed some of that data and made it more accessible.

The full interview is available in the audio player above. The following portions have been edited for clarity and length.

Nicholas says data is already collected by health authorities, but it's often not accessible to the average person. (CBC)

How would patients benefit by having more health care data available and accessible?

It's really interesting how health care is changing. Patients are becoming a lot more engaged in their health and in being able to make decisions about their health, decisions about where to go for surgery, who their healthcare provider is.

We are increasing the idea that communication matters between health care providers and patients. So I think having choice really speaks to pushing that forward, engaging patients in their own health and allowing them to be empowered to make decisions.

What kind of health data is available to patients now?

Surprisingly, there is a lot of data that technically is available. It's out there somewhere, if you know where to look for it. In terms of the data that is available though, I don't know if it often speaks to what patients are looking for when it comes to making a choice. So there might be lots of information about primary care at the level of your health care region or even your province. But I can't find out what care might be like at a specific family health team or with a specific doctor.

Emily Nicholas is a patient adviser across Canada. She thinks that patients should have access to health data to help them make choices. (Emily Nicholas)

So what do patients want to know? 

I'm not here to speak for all patients, but we know from some research that patients want to know more about what their experience is going to be like, and surprisingly, the most important thing isn't how many deaths were at a hospital– which feels really far removed from your experience– but what was the communication like and what were some of those softer things. The other thing is that the measures that we do have, the way we have designed them, hasn't really involved patients or public in their design.

We tend to assume that choice is a good thing, but is there any evidence that being able to make more choices actually leads to better health outcomes?

I think there's a mixture of evidence out there. But I would say absolutely in terms of engaging patients in their health, in terms of the mentality it sets for something like self-management...we have a lot of people with chronic diseases like diabetes and respiratory illnesses, things they are trying to manage, so having choice or feeling part of those decisions about your health is really important for you in terms of feeling empowered to do things outside of the clinic and feeling like this is also your responsibility.

We don't talk a lot about responsibility when it comes to patients because it feels like a dangerous subject, but we're more and more expecting people to be dealing with their health in their own time. I think that if we are going to ask people to do that and give them responsibility, you have to give them choice.

Do you think some patients might see this as an additional burden when really they just want help?

I think that's a really important point and it's something that comes up especially for me as well in this concept of patient engagement being responsible for your own health and being empowered….all of these things sound really lovely and inspiring, but in the depths of being a patient some of these things sound the opposite of what you want. You want someone to just say, "This is what we're doing, we're going to take care of you and we're going to get it done," and that's where we want to think about where these expectations for choice happen.

The choice should be the choice of the patient. There will always be people who say 'expert knows best' and maybe we let them know they have a choice and if they feel more comfortable going with that, I don't think it should be an expectation. But just because some people might feel that way, that shouldn't be an argument for not giving the option to make a decision or have the data available to them.-Emily Nicholas

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