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Author Topic: Participate in an Important Study!  (Read 6045 times)

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Offline Peter Staley

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  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Participate in an Important Study!
« on: June 28, 2006, 09:23:15 AM »
As posted in today's AIDSmeds newsletter...

The Institute of Work, Health and Organisation in the University of Nottingham in the U.K. is currently undertaking a research project with AIDSmeds.com and we would like to invite you to participate in the study. The aim of the project is to investigate the impact of online support group participation (i.e. forums, message boards, and chat rooms) in the quality of life of people living with HIV/AIDS. We would like to receive feedback from you about your experiences of receiving online support and how it affects your life. Your response will help us to understand the experiences and needs of HIV/AIDS individuals who participate in online support forums. Results would be published in academic journals and we believe they would serve as important tools in guiding the design and evaluation of intervention initiatives to improve the quality of life of people living with HIV/AIDS through effective online support.

The survey won't take long to complete and the target is less than 25 minutes. Most of the questions can be answered with a click. If you have been HIV-positive for at least one month and are aged 18 or above, please click the link below to access the survey. You views will be treated in strictest confidence and we will not identify you from your response.

http://www.surveymonkey.com/s.asp?u=800992277081

It would be great if you could also help us to forward the link to other HIV-positive individuals you know – the more responses we receive, the better we know how to improve your life. Should you have any enquiries, please don't hesitate to contact Phoenix Mo at lwxkhm@nottingham.ac.uk. Thank you very much in advance and we are looking forward to hearing from you!

Peter Staley
Founder
AIDSmeds.com

Offline Trish

  • Member
  • Posts: 332
Re: Participate in an Important Study!
« Reply #1 on: June 28, 2006, 09:47:27 AM »
Done Peter, and it took less than 25 minutes to complete.
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Participate in an Important Study!
« Reply #2 on: June 28, 2006, 09:55:04 AM »
Okie Dokie,

Done and done. It didn't take 25 minutes though.

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Lisa

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  • Formerly known as sweetieweasel/Joined Nov. 2004
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Re: Participate in an Important Study!
« Reply #3 on: June 28, 2006, 10:13:32 AM »
I even surprised myself by some of the responses.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline newt

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  • the one and original newt
Re: Participate in an Important Study!
« Reply #4 on: June 28, 2006, 10:46:08 AM »
Where's the link to the full study protocol and details of how people with HIV have been consulted in the survey design (University of Nottingham?)
"The object is to be a well patient, not a good patient"

Offline cmhjeff

  • Member
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Re: Participate in an Important Study!
« Reply #5 on: June 28, 2006, 10:58:00 AM »
Done, I'll take Tim Horn as a thank you ;D :P

Offline purpledragonfly

  • Member
  • Posts: 149
Re: Participate in an Important Study!
« Reply #6 on: June 28, 2006, 11:45:23 AM »
I did it. It didn't take 25 min. and it was very easy.was glad to help out.



Love,

Wendy

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: Participate in an Important Study!
« Reply #7 on: June 28, 2006, 11:50:35 AM »
Done Peter.........and relatively painless.  Glad to participate as always.
Thanks for the opportunity........... :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline DingoBoi

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  • Bailey's Infected Cream™ Served since 2004
Re: Participate in an Important Study!
« Reply #8 on: June 28, 2006, 12:42:55 PM »
done... it was simple.

I'm confused as to why it links to a webpage of AIDSMED.COM (a very generic looking site) at the end of the survey instead of aidsmeds.com.


Offline doyourowndamndishes

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  • Posts: 85
Re: Participate in an Important Study!
« Reply #9 on: June 28, 2006, 12:48:33 PM »
Ditto,

Done here as well.
"All that we are is theresult of what we have thought." -Buddha

Offline The Canuck

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Re: Participate in an Important Study!
« Reply #10 on: June 28, 2006, 01:00:53 PM »
Done here as well !

The Canuck

Offline Peter Staley

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  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Participate in an Important Study!
« Reply #11 on: June 28, 2006, 01:40:40 PM »
I'm confused as to why it links to a webpage of AIDSMED.COM (a very generic looking site) at the end of the survey instead of aidsmeds.com.

Thanks, Dingo -- I've notified the University of their link error.  The f**king owners of "aidsmed.com" refuse to sell the domain to us at anything close to a reasonable cost.

Peter

Offline Oscar

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  • 20 Years POZ
Re: Participate in an Important Study!
« Reply #12 on: June 28, 2006, 02:44:56 PM »
Ditto. Did mine!

Dan

Offline newt

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  • the one and original newt
Re: Participate in an Important Study!
« Reply #13 on: June 28, 2006, 02:55:22 PM »
So who exactly is Phoenix Mo, cos s/he's not listed as a UoN staff member (a student?)  - lwxkhm@nottingham.ac.uk is a non-standard UoN email address.

The survey as it stands contravenes 2 pieces of UK/EU legislation and UK research guidelines, plus it's on a non-secure internet connection which means anyone can see the info.  Surevymonkey, not secure, effectively public

All this may not matter 2 hoots to people, but us guinea pigs should know what's what before we click. 

Is Prof. Coulson involved?
"The object is to be a well patient, not a good patient"

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Participate in an Important Study!
« Reply #14 on: June 28, 2006, 03:05:52 PM »
Newt -- you and your conspiracy theories!  We checked them out, and it's all kosher.

Phoenix Kit Han MO
Msc in Health Psychology

Project supervisor:
Dr Neil Coulson    Neil.coulson@nottingham.ac.uk

However, I'm not familiar with U.K. laws, so feel free to complain to Coulson if you think the survey is unethical in any way.

Peter

Offline krakerjm

  • Member
  • Posts: 107
Re: Participate in an Important Study!
« Reply #15 on: June 28, 2006, 03:10:18 PM »
Got notification in the e-mailed newsletter...done, simple and easy, didn't take 25 minutes, guess I read fast and didn't have to think about answers; always honest here.
GWM, 63, PN w/footdrop
"I swear there ain't no heaven, pray ther ain't no hell"

Offline newt

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  • the one and original newt
Re: Participate in an Important Study!
« Reply #16 on: June 28, 2006, 03:25:05 PM »
There's no place for sarcasm in research on HIV subjects and, being a partly gracious and for certain the sexier queer, I will set your "conspiracy theroy" comment aside...

1. This is a student MSc project. 

I reckon the rough ride most other student projects get arriving here, the only reason this one is carrying any weight is your reputation, Mr Staley.  Most people like to be helpful.  I like good ethical standards in research.  I do not wash the hands of the shop-keeper after I buy a chocolate bar. 

All well and good, then, huffing aside, it's a kosher STUDENT project.

2. As a standard, online surveys collecting personal health, finanancial and psychometric information should be done via a secure internet connection. 

People may not care (iindeed, why care, they's not that secure) but it's a UK standard. An important STUDENT learning point.

3. Yes various privacy directives etc have been ignored so I will email Prof C tomorrow. An important STUDENT learning point.

People will make there own minds up about participating.  I guess most people with think I'm an arse.  Tough I guess, I'll buy a t-shirt with a pic of an arse on it.  The whole pic before hand and I wouldn't be so damn prickly (which is of course the right way to be with studies, from a community involvement perspective)
"The object is to be a well patient, not a good patient"

Offline angels4kelly

  • Member
  • Posts: 305
  • IT JUST IS!!.....OKAY!
Re: Participate in an Important Study!
« Reply #17 on: June 28, 2006, 03:27:35 PM »
I also received notification via the AidsMeds newsletter.
I did also take the survey.
All done! All good
Kelly
POSITIVE SINCE-10/1990
CD4-610
CD4%-29.3
VL-UNDETECTABLE
VIREAD,VIRACEPT, EPZICOM

MOST RECENT...
10/9/2006
CD4's-714
CD4%-30%
VL-Undetectable
DIAGNOSES POSITIVE 10/90
SAME MEDS, VIREAD, VIRAMUNE, EPZICOM.

SHOOT FOR THE MOON! YOU MAY MISS,
BUT YOU'LL LAND IN THE STARS :)

Knowing others is intelligence;
knowing yourself is true wisdom.
Mastering others is strength;
mastering yourself is true power.
 
Failure is not in falling down,
but the staying down

Offline Eldon

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Re: Participate in an Important Study!
« Reply #18 on: June 28, 2006, 04:22:44 PM »
More than Happy to participate.

Offline bluelove

  • Member
  • Posts: 178
Re: Participate in an Important Study!
« Reply #19 on: June 28, 2006, 06:46:38 PM »
Done.

It was easy and took way less than 25 mins.

Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
Re: Participate in an Important Study!
« Reply #20 on: June 28, 2006, 06:55:43 PM »
Done! That wasn't so bad.  ;D

- R
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

Offline BB

  • Member
  • Posts: 168
Re: Participate in an Important Study!
« Reply #21 on: June 28, 2006, 09:20:32 PM »
That survey made me realize how fortunate I am and how alone I am. All my choice however.

BB
Damn the Torpedoes! Full speed ahead! Adm. D. Farragut.

Started Atripla 8/18/06 and if I eat the right food when I take my meds, I get to go on a-trip-la.

Offline BooBoo

  • Member
  • Posts: 86
Re: Participate in an Important Study!
« Reply #22 on: June 28, 2006, 09:29:23 PM »
I did mine too.

A few years ago I participated in the "Managing Meds" study (not an online study) that was conducted by the University of Pittsburgh School of Nursing.  It was a study that looked at why some people were adherent with their meds while others were not.  A lot of the questions in the Managing Meds Project were almost identical to the questions in this online survey.  So, there was nothing new here for me.

Offline emeraldize

  • Member
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Re: Participate in an Important Study!
« Reply #23 on: June 28, 2006, 10:28:00 PM »
Finis! I appreciate the due diligence efforts and affirmations even if after the fact.

Offline Robert

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Re: Participate in an Important Study!
« Reply #24 on: June 29, 2006, 12:03:15 AM »
Why can't I access it?

I double-clicked to the opening page (uNIV. OF Nottingham AIDSMEDS STUDY  Introduction), read the intro and then clicked "NEXT".  NOthing happens.  I tried this morning and tonight from both here (Forum) and from the Aidsmeds Newsletter.  Nothing happens.  If no one else is having problems, I guess it's my browser? 

I'll try again tomorrow and see what happens.

robt
..........

Offline Poz Brit

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  • Posts: 158
Re: Participate in an Important Study!
« Reply #25 on: June 29, 2006, 04:06:09 AM »
Sorted,

John(UK)

Offline AliveAgain

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  • Posts: 1
Re: Participate in an Important Study!
« Reply #26 on: June 29, 2006, 06:32:32 AM »
Done, good refresher for me.

Offline carousel

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Re: Participate in an Important Study!
« Reply #27 on: June 29, 2006, 03:38:22 PM »
.
« Last Edit: February 15, 2007, 11:44:43 AM by carousel »

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Participate in an Important Study!
« Reply #28 on: June 29, 2006, 03:42:52 PM »

Newt's concerns are being answered via email, as will yours (I hope).

Offline newt

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  • the one and original newt
Re: Participate in an Important Study!
« Reply #29 on: June 29, 2006, 06:25:06 PM »
I forwarded the link etc to the UK-CAB (activist) mailing list and at least a couple of people will take up points on methodology, and, er, relevance of questions direct with the researcher/supervisor.  Phoenix Mo was kind enough to email me the protocol and I have sent my comments direct. 

People who want my take on the study method as it stands PM me, but I warn you, I am biased, I think its full of holes.

An important outcome of me bitching is discussion of forming a UK panel to assist/review/consult UK students planning to do research on people with HIV.

- matt "8 hrs Glasgow-Gatwick no food, no drink, are you kidding BA?" the newt.

Now playing - some hip-hop track or other
"The object is to be a well patient, not a good patient"

 


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