Transcript
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.”
More from: Laurie
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- Challenging Experiences – Laurie
- Challenging Experiences – Laurie (2)Learning terminology can be difficult for patient partners, and even some researchers, when you are not familiar with a specific area of research, says Laurie
- Endocrine (hormone) therapy – LaurieLaurie wonders why some women stop taking hormones.
- Radiation therapy – Laurie (2)After her Goldilocks mastectomy, Laurie researched her options and discussed them with the radio-oncologist.
- Radiation therapy – LaurieLaurie was determined to keep swimming and came up with a novel approach.
- Chemotherapy – LaurieLaurie requested more testing, did her own research, and then presented her recommendation to her doctor.
- Reconstruction surgery – Laurie (2)Laurie wondered if there were other options than a mastectomy.
- Reconstruction surgery – LaurieA Goldilocks mastectomy was exactly what Laurie wanted.
- Managing within the health care system – Laurie (2)To collect more information about her illness status Laurie requested an oncotype test even though she was not entitled to this test.
- Managing within the health care system – LaurieLaurie thinks that people can be better informed about their own illness.