Lesbian Health Survey- Can you help this PhD Student?? PLEASE!!

[Toughy]

Originally Posted by Melissa

But you are not on the IRB board for this survey. The survey writer gave a link directly to her Univ, her program and her own bio with a picture. Her name and diss advisor name is on the survey. She needs this to complete her diss so she can graduate. I think that your attitude toward this creates a bad image of this site. If you have personal/professional problems with this survey you should contact the Univ and her advisor or the admin of this site and ask for the thread to be closed.

Melissa

So I am, as a potential participant/volunteer in this survey (it IS NOT a study), supposed to just not ask questions about the survey? I, as a potential participant/volunteer am just supposed to shut my pretty little mouth and not ask questions of clarification about a survey for an academic dissertation.....be someone's guinea pig so they can call themselves Doctor......that has the potential to affect my ability to access appropriate health care?

As a potential participant, I cannot and will not put aside my years of experience in this field. Trust me........nobody wants me in their clinical trials or KABB surveys. They hate me. I ask the hard questions. I demand referenced information. I demand access to all information the researchers have. It is my right, if I am to volunteer my body or my experiences about my health to some academic in some institution of higher learner.

Her credentials and bio and those of her advisors are nice to have, but have really no relevance to Informed Consent documents. The Informed Consent document she provided did not answer my questions, nor has she answered my questions. As a potential volunteer/participant this is not acceptable and I have no choice but to not participate and suggest that anyone who asks me about this not participate.

Questions are never wrong. Avoiding questions or not fully answering questions is cause for stepping back and reconsidering.

A survey of 250 'lesbians' (without a definition) that the researcher proposes might affect the quality and kinds of health care I receive definitely requires close scrutiny. 250 self defined lesbians hardly provides any statistical significance in future health care for lesbians. It might however justify her dissertation conclusions in the minds of her advisory board. 250 lesbians answers to a poorly prepared questions and IFC documents should never affect my health care. The grade her advisors give her for this is entirely on them.

By asking me to take off the IRB hat is like asking me to cut off my head. IRB is about ethics. Ethics are who I am personally in the world. The totality of my experience drives my questions.

[Admin]

All,

I don't want to see this discussion devolve into a thing where the site is now responsible for the behavior of one or two members.

The person who posted the survey did email me and ask for permission to post it. I was bombed with work stuff that day and did not answer the email.

Allowing people access to the site who want to use this community as part of a case study, surveys, or Doctoral studies is a very gray area for us. On one hand, I think it's important for the voices of our community to be heard. On another hand, we simply to not have time to validate every single survey request that comes across my desk (and there have been about 30 since we started this site).

Since this survey was posted before I had a chance to look it over, I left it up to the members to decide if they want to participate in it or not since we're all adults and capable of making our own decisions. If you feel that this survey is something that you want to participate in, then do it. If you think it's bunk, then don't.

Bottom line for me is that anyone posting a survey where they ask this community for input needs to be aware that we are a very smart bunch and will probably be asking questions. I think it's responsible of Hokie to hang around and answer those questions.

What I am asking of all of you at this time is to cut the personal swipes and nastiness out. Ask questions, have the discussion, or provide info but don't stoop to ugly behavior with one another.

Thanks,
Admin

[Nina]

I wonder if it makes sense for there to be a vetting committee for surveys?...
since there have been 30 requests since you started the site, it seems that it's an ongoing and active aspect of the planet...maybe there could be some members to whom the requests can be sent...these members can have decided upon the criteria to be used when deciding if the surveys are legit, and seem to fit the planet population...

if this survey request had been submitted to the admin, and the student didn't hear anything back, I wonder how she made the decision to go ahead and post the survey?...it just seems that if someone believes it's correct to ask permission/approval not getting a response doesn't (in my view) read as an okay to go ahead and post the survey...

I wouldn't participate in the survey for a number of reasons, so maybe I shouldn't say anything...there might be surveys in which I would consider participating, but not until (or if) I could be assured of their veracity...I have learned a great deal about the survey development process from reading comments made here, and I appreciate what I've read...

[SuperFemme]

adele learned new acronyms today. IRB and KABB.

neither have anything to do with public transit or irritable bowel.

it's been a productive day and now i can rest.

[Lynn]

Took the survey. Hope it's helpful. I also found that some of the questions lacked appropriate answers, and leaving them blank wasn't an option. I'm wondering how the data can be interpreted with any reliability when the information isn't valid (by which I mean the truth). Also wonder how helpful it is to base conclusions on how a person "appears" rather than on how a person identifies. Some of the cultural biases of the writer seem to be reflected in the way questions were worded. But. I'm no expert. I like taking surveys and I sincerely hope that this endeavor provides useful information.

[Hokie Girl]

I would just like to address everyone who has provided input on this topic, and the way in which I went about posting. Thank you for bringing these concerns to light.

I did ask permission, and I am sorry I didn't wait to hear back from the admin. I was not trying to be unethical; I was just ignorant to the practices on this forum and knew my intentions were not to be exploitive or disrespectful. I was excited to get started. Again, MANY apologies.

Honestly, Toughy, I just didn't see your initial post, when I went through and answered the newest ones. And, when I came back to check in, there was the long post you had written. So, I wasn't trying to ignore your question. In fact, I want to thank you for what you said. I appreciate your perspective and your in-depth knowledge of research, the process, and the protection of respondents/human subjects. You have brought to light the intricacies of surveying (and you're right, this is a survey). When using the terms "lesbian" and "bisexual" I was thinking women who self-identified that way, and although I have written this up in my paper, you are correct, I should have included it in my consent.

And, again, you're correct, 250 respondents, obviously, will not provide the needed information to change healthcare for lesbians. It is a dissertation project, from which I am hoping to learn and grow and think about many of the things you have pointed out here. It is an exercise to improve my skills and become a better researcher in the future. I am a student, and I am learning. And, the responses gleaned from this survey are being used as a starting point in trying to better understand the areas that need further investigation.

My sincere interest is trying to collect a small set of data to better educate me in this area and to learn how to improve research in this area. The admin is correct, this forum is an intelligent group. I very much appreciate the feedback I've received. I will discuss these issues with my committee and during my defense, so I thank you. As well, I whole-heartedly apologize for the heated debate I sparked by inadequately answering (or not answering) posts. Truthfully, there was no lack of honesty or deception being employed on my end. I will work to improve measures and wording of questions, etc. for future work. This project has been a great exercise to offer insight into how to improve such things, and I sincerely appreciate your input.

So, again, I want to thank you. I'm grateful for your honesty and knowledge. I humbly request your forgiveness. You have provided me with much to consider.

Best,
HG

[Toughy]

There is no need to apologize, however thank you. Your response is much appreciated.

I can be an exacting human being and I am terribly protective about any kind of clinical research or survey.

You used the terms 'respondent/human subject'. One of the things we fought for during my time as a health care activist was to never see the term 'human subject'. The term is dehumanizing. Folks who participant are not subjects, they are volunteers. I am glad to see that the term subject was not used in your IFC document. All the IFC documents I wrote or reviewed had to use the term participant or volunteer....never human subject. It is unfortunate that message seems to have never made it out of HIV/AIDS research.

I don't know if you are familiar with the Gay & Lesbian Medical Association (www.glma.org). They have a project called the Lesbian Health Fund that gives grants to folks who want to research lesbian health.

Again, thanks for your response and I wish you the best of luck in your dissertation. Hopefully, defending your dissertation will be a little easier based on the input of folks from this site.

edited to add: heated debate is a good thing......

[Hokie Girl]

Toughy,
Thank you for your reply!! I VERY much appreciate your diligence, dedication, and passion to these issues.

Just a quick follow-up. . . we do not use the term "human subjects." Like you, we use "participants," due to the lack of respect and dehumanizing quality of the term "subject." Because of your exacting nature (Yes, I did pick up on that!- And, really, I appreciate your directness and candor.- As an aside, perhaps I could pick your brain in the future, because your experience in this area is quite formative, and I think we'd have some good discussions.), I opted to say "human subjects" because, unfortunately, that is still the terminology commonly used within many research silos. But, we too (behavioral research folks), realize humans are volunteers, and as such, choose to participate in our research. This is a battle we fight over and over again. . . so while the use of "participants" may not be as widely used as it should, please know it is getting better! And, I'm glad we are on the same page with this one!

And, thank you for your reference to the GLMA and LHF!

Best, HG

[Toughy]

I'm happy to let you pick my brain as long as I get to pick yours.........laughin......you can PM me anytime and we can exchange info.

Thanks for your diligence also. It's good to hear we did impact the idea of human subjects. Makes me feel a bit better....

I think I will do your survey based on this discussion.