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Thread: Approved survey regarding patients/caregivers and internet forums

  1. #1
    Administrator/SYSOP Mike Weins's Avatar
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    Thumbs up Approved survey regarding patients/caregivers and internet forums

    Howdy folks :)

    BT was approached by Hanmei Fan in Australia conducting an online survey about how patients and/or caregivers interact on internet forums. It will take about 30 minutes or so to complete the survey, you don't have to give your real name, but if you want to be eligible for the raffle you should provide a valid email address.

    This person should be along later today to give more information and post a link to the survey. My computer is in the shop so I wasn't able to co-ordinate this any better. I'll probably check in again later tonight before the library closes, but I might not make it back in time

    Participation is completely voluntary
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  2. #2

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    Hi everyone,

    My name is Hanmei. I am a researcher at the University of Melbourne in Australia and currently working on a project investigating the use of online health forums. The aim of the study is to verify whether the use of online health forums differs among people affected by different medical conditions. Drawn from the literature and findings from our previous research, we hypothesise that patients with minor and non-chronic illnesses are more likely to engage in an information-centred strategy while patients with severe and chronic illnesses are more likely to engage in a people-centred strategy. If the hypothesis is supported, the finding from this study can potentially advise the management of online health forums to strategically direct their resource to render more targeting service, based on different types of medical conditions. That is why we need people from a wide range of medical background and neurological conditions is one type of conditions that we are looking for.

    We are very interested in learning about your opinions and experience. We would like to invite voluntary participants:

    - who are patients or care givers,

    - have visited Brain Talk Communities in the past 7 days,

    to complete a 30-minute online survey. Participants will be asked about their perception of the message and the person that they have the best memory of during their most recent visit to the forum. All participants who complete the survey will have a chance to win one out of four $50 gift cards of their choice (as long as I can purchase it online), as our way to say thank you.

    This study has been approved by the University of Melbourne Human Research Ethics Committee (#1238574). For more information, please visit people.eng.unimelb.edu.au/hanmeif/recruitingAd.html. To access the survey, please visit www.surveymonkey.com/s/ohforum.

    If you have any questions, please feel free to contact me at h.fan at student.unimelb.edu.au.

    If you know someone who fit into the criteria and would like to participate, please forward the message or the links above.

    You can indicate whether you would like to receive a copy of the findings and you will receive an email from us approximately in March or April next year.

    Thank you very much for your time and support!

    This message has been approved by the Administration of Brain Talk Communities.

    Warm regards,

    Hanmei Fan
    PhD Candidate
    Department of Computer and Information Systems
    University of Melbourne
    http://people.eng.unimelb.edu.au/hanmeif/

  3. #3
    Distinguished Community Member SalpalSally's Avatar
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    What's da link, ..lol

    OOPS, sorry
    Last edited by SalpalSally; 11-15-2012 at 04:55 PM.
    Love, Sally


    "The best way out is always through". Robert Frost







  4. #4
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    I would urge folks to participate, having 2 kids in the health field and both of them have conducted surveys, they both have said that the biggest problem is getting people to participate so that the results are not skewed either way.

  5. #5
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    I just saw this, and will take the survey, but not tonight. Had I seen it earlier today I would have.
    Virginia

  6. #6
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    Mike, I must be dumb, but I can get into the link but not to the survey. Help!

    Thanks
    Virginia

  7. #7
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    Never mind Mike, all I needed to do was read the e-mail again. I read it last night and forgot where it gave the survey link. Sorry!
    Virginia

  8. #8
    Distinguished Community Member renee's Avatar
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    Tomorrow.
    Someone actually values my opinion.
    How can I possibly say no.
    Tomorrow.

  9. #9
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    I did it, but almost quit several times. I should have. It kept asking about my experience with my most recent visit and the person I remember most. [Of course that is what she stated in her post above] It just didn't seem to fit my current use of the boards because I look at the most recent posts, reply if I have info or an opinion, then move on. So I answered instead using my general experiences and I stated so at the end where it asked for comments. Possibly she will toss my completed survey. So be it.

    I don't see how it could reflect "how patients and/or caregivers interact on internet forums." Nothing asked how long I've been visiting nor why. But then I'm not an expert on writing surveys.
    Last edited by Parsi; 11-23-2012 at 03:20 PM.

  10. #10

    Default

    Hi everyone,

    I'm sorry for not coming back to check sooner. First of all, a big thank you to Mike (admin) for allowing me to post the recruiting invitation here. Also, thank you so much to SalpalSally, Gary, Virginia, renee, and Parsi for taking the survey and your valuable feedback.

    To address Parsi's comments, thanks very much for sharing your opinions about the survey. As stated in the 2nd message in the thread, the study is to examine whether the perception of medical conditions affect the use of online health forums. Based on your description, you may employ a information-focused strategy mainly paying attention to information/posting, rather than a person-focused strategy. So you may find the questions regarding the person you remember most a bit irrelevant. The focus difference is exactly what we are looking for and your response is valuable. Also, within one specific medical condition, the perception varies, depending on self-experience and self-expectation at the moment. So even if two people have the same medical condition, the use of online health forums may differ as well. Finally, the name of the thread was given by Mike so it probably reflects his interpretation of the study.

    If anyone has questions, feedback or anything, please feel free to ask! Thank you guys!!

    Hanmei

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