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Janette
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Re: Important - We need your approval or any objections plea

Postby Janette » Mon May 31, 2010 6:22 pm

Hi Beth,
Thanks for your post.

I doubt that our forum and it's members are responsible for changing anything at this stage, apart from making others BC journey easier from sharing support and knowledge.

Certainly we are members and supporters of the BCNA, who definitely do impact government change.
Janette


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Re: Important - We need your approval or any objections plea

Postby jayem » Mon May 31, 2010 5:59 pm

Beth, thank you for your further clarification but you have still not really answered what is going to happen to this research other than the possibility of it being published in an academic journal.

If this happens, are readers of the journal going to come and look at our forum? If it is published, will it be available with links in Google? Lovely for your academic credentials but not for us.

It has been stated by a couple of people that we support each other... no more... no less. We are not a political force and if that is the direction in which the forum went, I suspect there would be a huge drop in active members.

I am sorry but I am not comfortable with the forum being held up as exhibit A. I had reservations from the first post when Janette mentioned it and I am not reassurred by your post.

Janette, having considered Beth's proposal, I strenuously object to the forum being used in this way.
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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Re: Important - We need your approval or any objections plea

Postby berkinstock » Mon May 31, 2010 2:02 pm

Hi everybody,
I am the researcher who emailed Jetj with my request to study the forum for my research thesis. I am a mature age research masters student at Sydney Uni. I am in the digital communications and culture school, which basically means that we study the cultural changes brought about by the internet/digital technologies.

I am interested in studying how people diagnosed with significant medical conditions can use the internet to bring about change in the way that health and medical services are managed and delivered. It seems to me that when people get together online for the primary purpose of supporting each other through an illness, they also get a strength from the collective and the collective can exert pressure for change - even though that is not the primary purpose of the online forum. That in a nutshell is what the thesis is about.

The exerpt that was posted here referred to the theories that I need to use in the thesis - they are about how people participate in a democratic process, and relevant to the issue of health services delivery particularly now in Australia. The thesis will be finished by the end of the year and I hope to have it published in an academic journal after that.

To do the research, I ask for your permission to read the threads and to use a small number of direct quotes from your posts in the thesis. No person or alias will be named or identified in any way in the thesis nor in the data collected. Some of you have suggested that instead of reading threads, I conduct the research by questionaire, and I thank you for giving consideration for an alternative. But, because I am looking at the 'collective' rather than the individual, I am not sure it would work with a questionaire. I can certainly agree, if there are those of you who do not wish for me to read your posts or dont want me to use any of your comments even as de-identified, that I will not read or use what you post here. I respect and understand that this forum is a special place for you and I do not want to interfere or upset that in any way.
Beth

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Re: Important - We need your approval or any objections plea

Postby schoolteacher » Fri May 28, 2010 6:17 pm

I agree with all comments Our privacy needs to be protected. This form is not about political change. It is about people supporting each other as they travel the same journey.
On another forum I belong to (CRPS) a student asked for volunteers she could phone to interview. That was much more acceptable as YOU could decide what information YOU were prepared to share. Forum access is open slather. And I can't see that our posts are relevant to the topic, or what I understand of it lol

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Re: Important - We need your approval or any objections plea

Postby chrismelb » Fri May 28, 2010 12:25 pm

I am always happy to help with this sort of stuff; i am currently in someones thesis! I like jezza got lost at "democratic process....." .
Dx 9/03 EBC
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Re: Important - We need your approval or any objections plea

Postby Ruth » Fri May 28, 2010 10:07 am

I too would prefer the questionnaire option over observation.

I am a little confused as to what information they wish to extract from these observations. For me this forum is about support and understanding from women who have walked the same road as I, and is certainly not about enacting political change.
Ruth :kiwi:

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Re: Important - We need your approval or any objections plea

Postby Bella181 » Thu May 27, 2010 11:39 pm

I agree with you Jezza. I'd be much more comfortable with a questionnaire that we can CHOOSE to respond to. I have great reservations about someone just reading our posts and noting comments of interest to them, with no quarantee of context. Even if the writer isn't identified I feel really uneasy.

I am always happy to participate in surveys as I believe that contributing my experience is really important. I am currently participating in research being conducted by Uni of NSW about the real costs of receiving chemo - both financial and physical. To join the research I had it all personally explained to me, I signed a form, they signed the form, and I was given the contact details of the academic who was supervising the study, so I can withdraw from the study at any time. I can't see how individual permission can be given in the context of our forum. Also, I can not see the relevance of our forum to any study of political change. They'd be better to talk to BCNA because they are the group that lobby for change, and do a fantastic job.

This forum is OUR forum, it is personal and private, and I really hope it stays that way.

Belinda
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Re: Important - We need your approval or any objections plea

Postby jezza » Thu May 27, 2010 10:18 pm

I have always been a little bit hesitant when ppl ask to use info from the forum for other purposes....be it for media, to help a uni student for some assignment....whatever. This is on on line support group for ppl who have breast cancer, their friends and their families. We are not online guinea pigs.

I don't like the suggestion that this person wants to "observe" us and "use" short quotations in his/her thesis.

I know we can't stop them from looking and joining.

Perhaps if they set up a questionaire asking those who were interested to respond. Hopefully this may be set out in clearer terms than the original request as I too can't really make head or tail of what they are really on about.
Particularly the Quote below!

[i]example of a democratic process whereby community members enact political change through their participation. As a framework the research will employ both deliberative democracy and discursive design theories from political science.[/i]

I don't think I would like to be quoted myself even with no identifying data. What I say on the forum is for my friends here.

jezza
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Janette
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Re: Important - We need your approval or any objections plea

Postby Janette » Thu May 27, 2010 10:00 pm

Thanks Debs,
This is a Masters Student in Digital Communications and Culture at the University of Sydney, studying online health communities for research thesis.

I have asked that all of your concerns be addressed.
Janette




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Re: Important - We need your approval or any objections plea

Postby Debs » Thu May 27, 2010 9:43 pm

Perhaps if we could see a brief proposal of 350 words in language we can all understand so that we have a clear understanding of what the researcher is investigating and how the results will be published, how we will be de-identified, what subjects will they have access to, how they are going to measure their research and what tools they are using, what level of study is the sudent ie, undergrad, masters, phd etc. This is a very special place for us all and to allow access to someone for research purposes should be considered carefully to ensure that the research reflects this.
BC dx April 2008. triple negative, 1.2 cm, no nodes. Had FEC x 6.

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Janette
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Re: Important - We need your approval or any objections plea

Postby Janette » Thu May 27, 2010 5:38 pm

Thanks Ladies,
I personally think that any study that highlights the trials and tribulations of our members and others dealing with BC is a good thing. It is the best way to get the message out there and hopefully improve the situation if possible.. This particular study is more about how an online community such as ours can effect changes politically as I understand.

I will ask for an introduction and that an explanation be posted asking for your approval and hope that your concerns are addressed. Ethics is the operative word and and anyway we could exclude certain topics I feel. Please keep your thoughts coming. It is up to you all.
Janette




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Re: Important - We need your approval or any objections plea

Postby Gail » Thu May 27, 2010 3:11 pm

I agree that is definitely not plain speak to me and would like more clarification on what it is all about. I agree with what the other girls have said about so much is private and our sanctuary, so more clarification is needed. You obviously understand the request more than I do though Janette.
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Re: Important - We need your approval or any objections plea

Postby Marydean » Thu May 27, 2010 11:53 am

In theory I think it's a great idea, however I'm baffled by what sort of data they think they will collect?

Also, I'm interested in what field this person is studying...is it politics or sociology or what? Cos if it's politics then I don't think I would want that, but if it was a topic that feeds into health and welfare provision then that's different because the research is more likely to be helpful towards providing better support services.
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Re: Important - We need your approval or any objections plea

Postby SUE48 » Thu May 27, 2010 1:43 am

Hi Janette
I don't have any objections to this as long as it is more or less just an overview of our forum.
If it needs to get down to actual content within the forum, then I would object, there are sensitive issues we talk about here that outsiders should not see...and that is part of the reason why this forum is so great...we can talk about things that other's cannot bear....
Don't get me wrong, I am supportive of what this means, just feel the need to be careful in what outsiders can access thats all...but trust your judgement.
Regards
Sue
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Re: Important - We need your approval or any objections plea

Postby jayem » Thu May 27, 2010 1:09 am

Janette, there are a number of considerations I think before we agree to this request.

Primarily I would like to know... in plainspeak please... what the parameters of the study will be.
For what purpose will the study be used?
Are we going to give this student access to all sections of the forum... I am thinking here of elements of the mojo thread, Gail's dating thread and, of course, our Angels thread... among others.

On one hand, this would seem a wonderful opportunity to promote the forum and the benefits it has provided, and continues to provide, to many women and their partners and families. However, I would hate to see the integrity of the forum compromised in any way for the sake of a student study.

My opinion Janette is that I would like more clarification of the study before I commit to making a decision.

I will be interested to see what others say.
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.


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