LymePolicyWonk: IDSA Lyme disease survey results out! What’s important to patients?
Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.
I encourage you to read the survey results and let me know your thoughts. We included a link to them in our initial post to the IDSA, which we made in conjunction with the LDA and 67 other patient groups.
We have compiled not only the quantitative picture, but also selected some of the comments. One of my favorites is:
“I’m the one devastated by this disease, and the truth is, you don’t know for certain how to treat it. With a condition fraught with so much uncertainty and unknown, the most we can be offered is the state of all available knowledge (even if they oppose each other), access to (and insurance that covers) all treatment approaches, and the freedom to make our own choices.”
Female, 51, OR
This survey is part of a series of surveys of Lyme disease patients conducted by LymeDisease.org. Two of the previous surveys were published in peer review journals and can be accessed here and here. Find out more about LymeDisease.org surveys. Contact the lead author, Lorraine Johnson, JD, MBA at firstname.lastname@example.org.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk.