Is this patient empowerment or something else?

It's not really clear. I wasn't in the initial meetings to set up the conference. Thanks for your comments and support!

Thanks, Pat. Yes, I do agree and there is lots of evidence to support not only the differences in perspectives but also the gaps. Leaving out the key participants - the ones who have the most to benefit does not make sense and it helps communications between all. I guess in this case and especially knowing his background, he must have I hope some rationale for not wishing to include a patient in the venue. Does no one understand why the reaction or has anyone actually spoken to him about his reasons? They may be very valid, but at the moment it seems unknown??

Sandi - Yes, the person is a volunteer and either has the disease or the disease in in his family, I'm not sure. I have the disease. I was speaking on behalf of both myself and the generic "you" of all of us patients that are affected by this cancer in terms of being left out. I attend a lot of cancer conferences related to various topics and except when there is only one speaker there is usually at least one patient who is also presenting. The patient perspective is a different one and very valuable, as I'm sure you know. To me the information is incomplete when you only get the clinical side of a topic. Hope that makes things clearer.

Sandi - Thanks so much for your response and for posting my comment on your blog. The conference is being provided by a patient support organization, and their representative does want to include patients. The person who is questioning the need is a patient/community volunteer.

Diane - The conference is pretty much on one topic. If that topic is to be explored completely for those in the audience then I think that includes making sure the patient perspective is a part of it.

As you both know, when you have cancer you lose control over many things and learn to accept it. You don't expect to be left out of your own support organization's outreach on your behalf.

It all depends on who is the conference organizer/funder, does it not? It is quite interesting that patient-driven/led organizations are more inclusive of all interested parties - - expert patients/expert professionals. While this is a generalization, it has been in my own experience easy to include everyone - there are main themes underlying our basic needs.

Pat,

Maybe it's my years in journalism, but I think it surprises me more than anything else! Especially in a day and age when we have so much information available to us from so many directions, I am surprised that it does not come naturally to anyone planning such a conference to include information from as many kinds of sources as possible. It seems -- SEEMS -- like a no-brainer, but clearly it isn't.

It does seem like it would be hard to choose a topic or a patient participant simply because there are so many topics and because everyone's experience is so different. With an audience of cancer patients, how do you pick something relevant to as many as possible?

Anyway, I hope your idea prevailed!

Sorry, I signed in afterward and that is why the comment is Anonymous. (personally hate anonymous comments)

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.