I appreciate the highlighting of this patient issue which is a rather old and outstanding one in many cases. I have heard many 'excuses' why patients are not either included and/or acknowledged in conference proceedings and in particular when the conferences are apparently for public/patient education. The excuses most often is patient 'confidentiality', however, that is a red flag, of course. 'We' are not yet at the stage of a fully inclusive process and yet decisions are being made for and about us without us. Obviously, not all patients/family caregivers wish to become intimately/publicly involved, however, overlooking those who do is a very sad and large mistake. A complication of this issue is also the factor of who speaker for patients and why some feel that can do so. A very large and ongoing advocacy concern of my for many years. If anyone wants to look up the UBC (University of British Columbia) website, several years ago a conference took place: "Where's the Patient's Voice in Health Professional Education?". It was a good start....
I posted this link on: Ovarian Cancer and Us blog (http://ovariancancerandus.blogspot.com) with thanks, for highlighting this concern.
Comment Reply
I appreciate the highlighting of this patient issue which is a rather old and outstanding one in many cases. I have heard many 'excuses' why patients are not either included and/or acknowledged in conference proceedings and in particular when the conferences are apparently for public/patient education. The excuses most often is patient 'confidentiality', however, that is a red flag, of course. 'We' are not yet at the stage of a fully inclusive process and yet decisions are being made for and about us without us. Obviously, not all patients/family caregivers wish to become intimately/publicly involved, however, overlooking those who do is a very sad and large mistake. A complication of this issue is also the factor of who speaker for patients and why some feel that can do so. A very large and ongoing advocacy concern of my for many years. If anyone wants to look up the UBC (University of British Columbia) website, several years ago a conference took place: "Where's the Patient's Voice in Health Professional Education?". It was a good start....
June 16, 2010 - 4:29amI posted this link on: Ovarian Cancer and Us blog (http://ovariancancerandus.blogspot.com) with thanks, for highlighting this concern.
This Comment
Reply