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First, ‘needing accommodations’ is an answer, not an explanation. You either need them or you don’t – and a person or organization requiring explanation from a physician is absurd.
Second, I am no where near as involved as you with these organizations, but I can’t help but wonder if the healthcare industry – doctors, nurses, healthcare management – are in some way intimidated or afraid of patient involvment. They say they want patients involved, but their actions don’t necessarily confirm that – they want patients involved on their terms.
Looking at PCORI’s Mission statement – I would ask how the research is guided by patients. And as for their Vision – I would want to know who interprets the research. Look at RPF – those collecting and assessing the information have a true stake in the game and their perspective is not clouded, they live the experience.
When looking at PCORI’s Board of Governors, fourteen of the twenty-one individuals are doctors/nurse, two are attorneys and the other five are in healthcare management. Where is there representation by a ‘patient’?
My favorite reference is a vet specialist whose tech told me in response to asking a question “you people need to stop reading on the internet, you will never know as much as the vet, you’re just wasting his time.”
Amen, Donna!! (p.s. I love –well, you know what I mean!– your vet story too!)
Kelly, I cut out an article in last night’s issue of our local paper, and I’m going to get the link and e-mail it to you. When I saw it, I was thinking that the woman in the headline could be any RA patient–and especially you because she, too, is a patient advocate for another disease! I had to jot you this quick note, though, because I wanted you to be a bit “comforted” to know that this “importance of patient input” theory is shared by others with other diseases as well. Perhaps our strength in numbers will move this movement along faster! Your points about not being treated the same as any other speaker are so well stated, and I am incensed that the powers that be could be so reluctant to handle this speaker situation in a more appropriate manner! Grrrr………..!
For some of these, I think the patient involvement they want is be involved by following doctor’s orders. ONLY.
Compliance, not questions.
Thank you very much for this post. Hadn’t thought of a request for “proof” and am so glad you have already come up with the proper responses — I will memorize! Am just researching the whole existing patient advocate issue since I’m going to be writing about sleep disorders — although I realize the underlying theme of just about everything I’m reading and thinking is related to whether or not sick people are listened to and heard by their “healers.”
I have passed on to a friend w/RA the link to your blog, and I look forward to reading more of your work.
All best wishes to you, and I love the fountain pen spear!
Sometimes doctors want us to be seem for them to make money and not be heard. My doctor will listen to me which i thank him for. I had bad swelling at times so i rolled my pants up an used my smart phone carried in pictures. Helped a bunch.