Challenging Experiences


I mean, I can keep up now, but it took a while, a good serious learning curve, to get up to speed on the terminology and the language. I feel quite comfortable now, but even then, as I sort of open up into other areas, there's always new things, right. Like, I mean, I know rheumatology quite well now, and even over – you know, even with surgical safety or maternal health, there’s these different areas that I’ve always got to learn something new.

A few patient partners also discussed potential concerns around how their information will be used or shared, and considerations around being easily identified through their contributions. For example, Julie shares the following:  “I’m not sure about the perception of risk for patients. Probably the biggest risk or concern that patients and families might have is the sharing of their information without their permission and use of their data and their information beyond the scope of what they had originally agreed to. There is a risk for patients who are active in the system of sharing back perhaps around patient safety or quality improvement research around adverse events or poor experiences that they’ve had. They fear how that might impact their ongoing care. So that is a potential risk.”

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