By: Kathy Day RN
Dave, do you know if it is ok to publish the list of attendees with their contact info? I have that, but there are no identifiers…as to the hats they wore…ie. patient, patient advocate, consumer,...
View ArticleBy: Lkay54
Kathy, were there any plain old patients in attendance or was everyone attached to a group in some form or another? It seems reaching the ordinary person living with disease is the goal of PCORI but...
View ArticleBy: e-Patient Dave
I haven’t seen the list. It’s a public agency so I’m sure the list of attendees is open. It’d be a great idea to identify their affiliations! That would demonstrate how the process is working. I’m sure...
View ArticleBy: e-Patient Dave
LKay, What – specifically – do you mean by “the usual power brokers”? I think I hear what you’re talking about, but I think we want to be careful not to create a vague impression without having...
View ArticleBy: Lkay54
Dave, By power brokers I am speaking of who controls the agenda – both for things like the workshop, the process and especially how the money is dispersed for research. The medical doctors and PhD...
View ArticleBy: e-Patient Dave
Holy cow, LKay… I sure hear a pile of anger and suspicion. Understandable, but let’s try to only react to things that actually happened, not what might be happening, okay? Washington’s had its cesspool...
View ArticleBy: Joleen Chambers
I am an engaged patient advocate. I applied early for the meeting and was not invited. I participated by webinar and Twitter. Susan Sheridan says she is not familiar with the issues of harmed patients...
View ArticleBy: Regina Holliday
Dear Friends, I did post a picture of the attendee list on the #PCORI twitter stream prior to their announcement they would post the list on Monday. So it should be still up. -Regina Holliday
View ArticleBy: Linda KEnney
pcori asked permission to publish the list of attendees and asked for those who did not want their name list to let them know, which I believe is a respectful way. They plan to publish to the website....
View ArticleBy: e-Patient Dave
Thanks for your note, Joleen. What specifically do you mean by “ignored or rebuffed”? Do you mean you got no response at all? What is “rebuffed,” specifically, besides getting a no? Of course I’m not...
View ArticleBy: Lkay
E-patient, My thinking was this is a place to have an honest discussion, but comments such as ‘Holy cow, LKay… I sure hear a pile of anger and suspicion’ don’t contribute to the building of community...
View ArticleBy: Kathy Day RN
Yes, Lkay, there were plain old patients, I am both plain and old and I was a cancer patient. But, as I said in my blog, I wore more hats that my patient hat. Maybe most important to anyone here is...
View ArticleBy: e-Patient Dave
LKay, we need to talk … what are you talking about, me being the lone patient on the board?? What on earth are you talking about? I’m not on PCORI’s board. If you mean the patient advisory group that...
View ArticleBy: Joleen Chambers
My reply is offline by email. “Emotion-laden” comment is mis-directed and inaccurate.
View ArticleBy: Lkay54
My apologies for misunderstanding and mistating your role with PCORI. I thought from the comments from Bob West in the above discussion that you were closely aligned with PCORI.
View ArticleBy: PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention) |...
[...] in a series announced yesterday of posts by SPM members who attended last weekend’s PCORI workshop. This one’s from [...]
View ArticleBy: PCORI Workshop post 3: Danny van Leeuwen (@HealthHats) | e-Patients.net
[...] Next in our series of posts by SPM members on their experience at last weekend’s PCORI workshop. See Monday’s introductory post. [...]
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