Member of the Pitt Patient and Family Advisory Board since 2016
What is one thing you really like about being a member of a patient advisory committee?
When something totally unexpected happens to you, like what happened to me, it’s not like you say “poor me”, but ultimately, you want a way to make it a positive thing. When this opportunity came along, I thought “I can use this to help others.” It’s a gift to be invited into this community of people sharing their experiences.
What is one interesting experience you had at a patient advisory committee meeting or a time when you thought the patient input really helped the research team?
The thing that really stood out was the time we had consensus, even though we didn’t vote on it, that the majority of us would have chosen differently (about having surgery) if we had had the information we have now. This was a powerful thing—these were life-changing decisions, and look how many of us would have chosen differently.
How has being part of a patient advisory committee affected your attitude about research generally or the UW-Madison?
I think I was so amazed that there was a doctor out there who wanted to provide this kind of care. I have not good experiences with doctors, and none of them seems to care about my questions. To have a doctor who wants to work at this and try to deal with my concerns. . . I would love to have (Dr. Pitt) as my doctor. I have a lot of respect for UW putting something into this research.
Please tell me something interesting about yourself that people might be surprised to learn about you.
I love researching things, diving into things. When I woke up from my surgery, as soon as I was able, I was Googling everything. That’s why I feel so connected in this group—I love the research side of it. I’ll research things to the hilt to learn more about things I’m interested in. And one other thing—I have always wanted to design greeting cards for Hallmark!
Each month, WINRS interviews a community or patient advisor about their experiences on an advisory board or committee. Know someone on one of your advisory boards who might want to be interviewed? Email firstname.lastname@example.org