I was so proud to be asked to participate in the following article. Kim at I Tripped Over a Stone and Kali at This Spoonie Speaks were also also participated, both are excellent advocates, please make sure and check out their blogs. Please see what we had to say on the subject of clinical trials, and add your voice by adding to the comments. The people at Antidote really want to know what you think. I hope you will feel we were successful advocates for the chronic illness community.
…….”We spoke with three patient advocates living with invisible illnesses about how researchers — from those involved in study design all the way to site staff — can better engage them and their communities and drive clinical trial patient recruitment. Here is what they had to say:………… click here to read the whole article
Interested in learning more about participating in Clinical Trials? Click on the big black button on the right hand side of my blog and you can search for trials in your area. There is never an obligation, accept or deny any trial you are matched with.
Picnic with Ants 
Nice gathering of thoughts…thanks!
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It is true, Antidote really listened to what we had to say. It was an honor to work with such great people! And of course you and Kali, Wen! ~K.
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Cool! And thanks for participating, and then relating your experience and thoughts.
I was in the Otonomy OTO-104 trial at Duke back on 2014…Glad your experience was more pleasant! Hahaha
Healthy happy days to ya…thanks again.
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I’d love to hear more about your experience. I was in a study at Duke, it didn’t help me, and it was rather unpleasant. ..but the drs running it were great, and I think they learned a lot that might help others in the future. I hope so anyway. I’d do it again. Thank you for sharing your experience.
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Thoughtful input on an important topic as more and more drugs/treatments are hitting the market, or being considered. Those with many chronic illnesses do need different considerations in order to enable them to participate. As you suggest, the lack of opportunities outside of urban centers and dearth of knowledge about the trials means many people are unable to participate.
I think it is important to note, as you do, that clinic trials help the general population, even if specific patients, such as yourself are not.
The opportunity to work with enlightened, involved, and caring professionals does make a big difference — for many with chronic illnesses — to be believed and considered by the health profession is a great boost.
Excellent article — well done to all three!
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