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Author Topic: Research Why or why not?  (Read 3182 times)

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Offline research

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Research Why or why not?
« on: December 26, 2006, 02:06:14 PM »
Hi All,
Happy Holidays.  I am researcher new to the field of HIV/AIDS.  I am trying to get a better understanding what some of the reasons are for patients choosing to do research and reasons why some chose not to.  I figured asking the patients themselves would be the best way.  Any feedback would be great.  Thanks and Happy New Year!!!!!

Offline emeraldize

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Re: Research Why or why not?
« Reply #1 on: December 26, 2006, 03:34:56 PM »
Hi Research

If you read FIVE MORE PARTICIPANTS you'll get an explanation as to why I do. The next NIH study for which I must wait six months in between in order to participate will require a muscle biopsy. Just like ordering chicken, I get to choose...wing or thigh.

Em

Offline OzPaul

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  • a very blessed 29 year ltnp
Re: Research Why or why not?
« Reply #2 on: December 26, 2006, 06:42:56 PM »
Hi Research

Just to clarify something, I do not consider myself a 'patient' in the research I'm in but rather a 'participant'.

If you go to the thread 'You may be a LTNP too' you'll read about some of us here and our motivation factors in our decision to participate or not. LTNP stands for Long Term Non Progressor. I've been positive for 25 years and blessedly unaffected by the virus (in a medical sense).

I participate because as a so-called 'elite controller' LTNP I feel it is important to try and help researchers in their quest to develop a vaccine or cure for HIV/AIDS. I'm involved in three studies currently. In addition to the NIH  LTNP study and the Harvard 'elite controller' study, I participate in on going LTNP research at the University of New South Wales in Sydney. I am an American living in Australia. I visit each institution 1 to 2 times per year.

Cheers
Paul

Offline emeraldize

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Re: Research Why or why not?
« Reply #3 on: December 26, 2006, 09:01:03 PM »
*
« Last Edit: December 29, 2006, 08:52:33 AM by emeraldize »

Offline research

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Re: Research Why or why not?
« Reply #4 on: December 27, 2006, 10:33:00 AM »
Hi everyone,
First I would like to say thank you for responding.  Second I want to apologize if I offended anyone by referring to research participants as patients.  As stated by Emeraldize I used the word "patient"-- because if one has HIV they are a patient under a doctor's care somewhere and opting to participate in research. Yes!  Also because many times I have come across individuals referring participating in research as being "guinea pig".  And here I have to explain that you are not a "guinea pig" if you are in a trial.  That in research we have patients with conditions seeking other alternative treatment, not "guinea pigs"  But again I do apologize if I offended anyone.  You are right you are a participant in a trial.

As I stated in my first message I am trying to get a better understanding why some make the choice to participate and why others don't.  It so easy for me to go out and try to encourage people to join a trial.  But the only way for me to do my job better is to truly understand what the barriers are keeping people from joining.  And as I stated the best way to do that is to ask and here I am. 

Emeraldize, yes my organization is recruiting for trials.  But we are located in NYC so I am not sure if that makes a difference.

Thanks again 




Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Research Why or why not?
« Reply #5 on: December 27, 2006, 10:56:45 AM »
Research,

I would suggest that when you are talking to a prospective trial candidate, that you ask them how they feel about taking part in a trial. Ask open ended questions as opposed to questions that can be answered with a yes or no.

And most importantly, listen to what they say. You'll draw a person out more if they feel they are really being listened to - yes or no questions tend to do the opposite. Making eye contact as they talk is a very good way of conveying this, as well as leaning toward them slightly and nodding now and then. If you need to make notes, make sure you keep looking up and making eye contact. 

Good luck

Ann
« Last Edit: December 27, 2006, 10:59:42 AM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline research

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Re: Research Why or why not?
« Reply #6 on: December 27, 2006, 12:16:03 PM »
Ann
Thank you for your response. I do in fact do the things you've suggested.  And for the most part I can get positive results, but there is a small group that I still can't get to. The is the group that truly views research as a bad thing and will not go into discussion about why. 

Offline oaktree

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Re: Research Why or why not?
« Reply #7 on: December 27, 2006, 12:47:13 PM »
First of all let me say that I was poz for 11 years before I even knew there was a trial. When I called nih they were very quick in asking me to come to Bethesda. After the first blood draw they wanted me back to be in the LTNP study. I feel blessed that I can, in some small way, contribute to the end of the disease. I think a great number of people don't know about the studies. I for one just found out about this forum.

Offline emeraldize

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  • Posts: 3,353
Re: Research Why or why not?
« Reply #8 on: December 27, 2006, 01:04:58 PM »
edited --Ann's insightful post caused me to review my previous post--I agree with hers
« Last Edit: December 28, 2006, 12:05:47 PM by emeraldize »

Offline emeraldize

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Re: Research Why or why not?
« Reply #9 on: December 27, 2006, 01:10:19 PM »
Addendum: Just saw Oaktree's post. I agree that info about such studies is not something you bump into easily. I went looking for research opportunities, they did not look for me.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Research Why or why not?
« Reply #10 on: December 28, 2006, 07:46:49 AM »
...but there is a small group that I still can't get to. The is the group that truly views research as a bad thing and will not go into discussion about why. 

research,

Many people are distrusting of the medical establishment when it comes to testing and trials. Two words - "Tuskegee experiment". Aside from a basic mistrust of that which a person does not fully understand, things like what went on in Tuskegee fuel fears and conspiracy theories alike. (and Tuskegee hasn't been the only study where unethical practices have been uncovered) Perhaps this is the root of the reluctance you encounter.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline bobino

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  • Posts: 264
Re: Research Why or why not?
« Reply #11 on: December 31, 2006, 06:26:28 PM »

My reason for participating in research is extremely simple -- self-interest.  As an HIV+ person, I have every interest in seeing researchers succeed in getting a better understanding of this disease.  The more rapidly research progresses, the more rapidly effective treatments (and a cure) will be found.  Those of us living with this disease are the ones who will benefit from this research.  The very least we can do is assist those involved in the research to do their jobs.  I participate in research to the extent I am able and eligible.  I will continue to do so until I am no longer able or the research is no longer necessary.

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline Christine

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Re: Research Why or why not?
« Reply #12 on: January 02, 2007, 10:31:09 AM »
I choose to participate in research for a couple of reasons. First reason, is that at this point in my life with HIV, research drugs are one of my only options which still provide hope for me. I have a pan-resistant virus with low tcells and detectable vl.

Second, I want to be able to make a difference in the HIV world. I don't have the health right now to volunteer, or be an activist. And, I don't think I have the emotional strength to do those either. So, I choose to participate in research.

Hopefully, the doctors can learn something from me which can help another hiv+ person in the future.

I know there are people who are very distrustful of research. The hospital I go to is a teaching university, where a lot of research is done. There are people in the community who will not go there because of that. They think if they are admitted to the hospital or even see a doctor there ( for any reason, including family or general doctor care) they will be used as a 'guinea pig'.

Personally, the reason I choose to go there is because they do a lot of research. I want to be in a place that values learning, and being on the forefront of medical care.

I hope this helps. If you have any specific questions, please feel free to ask.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline research

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Re: Research Why or why not?
« Reply #13 on: January 08, 2007, 03:05:18 PM »
Happy New Year to everyone.  I wanted to say thank you to all those who responded.  Your feed back has been really helpful

 


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