Carol learned that sharing her personal experience with illness is valuable information for researchers
Transcript
People in general, researchers, doctors, etc., were very accommodating to me. They didn’t have the information either, I was like, oh, this is special. It was basically that one time. That wasn’t too long ago, maybe two years ago, but no, I’ve always been approached with respect and people have valued my input, my information, my history. And uh, so, yeah. I like participating, because I also learn. I also learn about other people or ways or – life is a never ending [learn]. My dad always said, learn something new every day, even if it’s a word, you know?
Interviewer: That kind of leads me to the next question, because I was going to ask, you already said you’re learning, what are some of the benefits of being involved in the research, for yourself?
The benefits for myself is that I value the information I have given of myself to people that do need it. And, you know, there’s – I benefit that way. And, basically it’s just about being a human, giving human input, giving experience… and, well. The benefits. It’s just something I like. I like doing, I like being a part of, if it relates to me, if I could be valuable, yeah. That’s where I benefit from it.
To give the information and history that I personally have dealt with. And, so that it could be used in a beneficial way for others.
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- Improving Patient Care and Experiences – CarolCarol learned that sharing her personal experience with illness is valuable information for researchers
- Impact on Research – CarolCarol helped revise language in a research survey to ensure that patients would not feel judged in how they answered the questions.
- Defining partnerships – CarolPatient partner terminology all has the same meaning, according to Carol
- Advice to others – CarolCarol encourages researchers to be relaxed, honest and empathetic
- Valuing contributions – CarolCarol benefits from being able to provide information that can support people who need it