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Thread: Question for the patients and parents

  1. #1
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    Question for the patients and parents

    How would you feel if a researcher that you had once worked with contacted you to see how you were doing several years after the research study? And I suppose the crux of this question lies in the method of contact. Mainly, facebook. With over 400 million active users it is likely, especially with the teen population, that they have a FB account. I'm wondering if anybody would have objections to that or think it inappropriate.

    Case in point. Most of the subjects in my study have been mostly lost to follow-up. (This could be either a good or bad sign for our study). So I was wondering about sending them a message on FB just to ask how they were doing. Not friending. Just sending a message.

    As an adult male, it would be difficult not to feel inappropriate when trying to track down an adolescent female. It even feels inappropriate to even ask this question. Not to mention, I have no idea what an IRB or ethics panel would think about it. (Although I'm not trying to collect data.) But I worked with many of these families several times a week for several months and I can't help but wonder how they are doing.

    Thoughts?

  2. #2
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    Hi...

    I think I'd be concerned if someone contacted me via Facebook for follow-up. How do you have their identities? Also, do you need to be concerned about the CHR? When we write our CHRs, we have to specify how, when, and where we'll be contacting patients.

    Regards,
    Linda

  3. #3
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    I personally wouldn't mind.

    But I can imagine that once they find out you were just curious as opposed to having a bone fide academic reason (like doing a follow up study) then they may question your motives. Scientific curiosity is not something that get cultured in the US so they may not understand.
    Last edited by Pooka1; 03-18-2010 at 09:37 PM. Reason: spelling
    Sharon, mother of identical twin girls with scoliosis

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    Question: What do you call alternative medicine that works?
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    I think I'd be concerned if someone contacted me via Facebook for follow-up. How do you have their identities? Also, do you need to be concerned about the CHR? When we write our CHRs, we have to specify how, when, and where we'll be contacting patients.

    Regards,
    Linda
    Quote Originally Posted by Pooka1 View Post
    I preonally wouldn't mind.

    But I can imagine that once they find out you were just curious as opposed to having a bone fide academic reason (like doing a follow up study) then they may question your motives. Scientific curiosity is not something that get cultured in the US so they may not understand.
    This is pretty much what I thought. I'll just take the fact that they more or less stopped coming in for clinic as a good sign and leave it at that. At the bare minimum it is certainly ethically questionable and could very easily be misinterpreted. Just trying to figure out how current ways of communication can/does fit in with practice or research if at all.

  5. #5
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    Facebook

    Skevimc

    I don't think communication on FB with study participants would be a problem. Patients might not understand why you are showing them so much interest, but study participants know they are in a special group. It just depends on how you do it. If your message is focused and feels "clinical" it's not going to raise anybodies blood pressure. A medical form letter would be fine.

    However if you can do this in regular mail it would be even better.
    Last edited by Dingo; 03-18-2010 at 05:56 PM.

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    Quote Originally Posted by skevimc View Post
    This is pretty much what I thought. I'll just take the fact that they more or less stopped coming in for clinic as a good sign and leave it at that. At the bare minimum it is certainly ethically questionable and could very easily be misinterpreted. Just trying to figure out how current ways of communication can/does fit in with practice or research if at all.
    I actually think that researchers have less latitude on social networks than the average person. The chance is too great to lose, even inadvertently, what is most important.

    Scientists traffic in honest inquiry. Intellectual honesty, not some mathematical model, is the heart of science. Without that, you can't do science and that is why we have unfortunate issues like the Spinecor literature. If this were my field I would stop reading those authors.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Skevimc

    I wouldn't mind. If the contactee is still an adolescent though, as a parent - I probably would mind ;-) Agree with Dingo - it would all come down to how you do it. My neurosurgeon used to contact me every so often (by mail on his office letterhead) to see how I was doing - was always glad to answer him and his contacts reminded me how fortunate I was. New rules today with new technology - where anyone can pose as someone else, or reinvent themselves so to speak. I think a professionally well worded private message would be fine under most circumstances - good luck in your follow up!

    Sharon - as someone benefiting from Spinecor bracing I'm curious as to what concerns you with the literature. Is the concern specific to Spinecor or is it specific to all published literature in general? As far as I know, Rivard publishes according to SRS standards.

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    Quote Originally Posted by mamamax View Post
    Sharon - as someone benefiting from Spinecor bracing I'm curious as to what concerns you with the literature. Is the concern specific to Spinecor or is it specific to all published literature in general? As far as I know, Rivard publishes according to SRS standards.
    My concerns specific to Spinecor are numerous. This has NOTHING to do with SRS standards. I have formed an opinion as to the quality of the data going in and therefore the quality of the interpretations coming out.

    That opinion happens to coincide with that of many surgeons in the pediatric orthopedic community. The reason is related to why orthopedic surgeons as a group are almost to a person are not using Spinecor in children. Yes there are a few exceptions.

    Now as to Spinecor for pain relief in adults, I think that is still a live study subject and there is already some data in that column. Also, it may be that Spinecor slows progression in adults but they have to show that to claim it.

    Finally, I think Spinecor appears promising in the JIS crowd.
    Last edited by Pooka1; 03-18-2010 at 07:59 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Quote Originally Posted by mamamax View Post
    good luck in your follow up!
    No... There'll be no such follow up. If I really was interested I should draft a letter and have the docs back in KC send them out.

    Quote Originally Posted by Pooka1 View Post
    I actually think that researchers have less latitude on social networks than the average person. The chance is too great to lose, even inadvertently, what is most important.

    Agreed. I even asked Linda what she thought about me joining this site. I'll admit it's much easier wearing my "Kevin" hat than my "K. McIntire et al" hat.

    I really appreciate everyone's thoughts on this.

  10. #10
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    Quote Originally Posted by skevimc View Post
    How would you feel if a researcher that you had once worked with contacted you to see how you were doing several years after the research study? And I suppose the crux of this question lies in the method of contact. Mainly, facebook. With over 400 million active users it is likely, especially with the teen population, that they have a FB account. I'm wondering if anybody would have objections to that or think it inappropriate.

    Case in point. Most of the subjects in my study have been mostly lost to follow-up. (This could be either a good or bad sign for our study). So I was wondering about sending them a message on FB just to ask how they were doing. Not friending. Just sending a message.

    As an adult male, it would be difficult not to feel inappropriate when trying to track down an adolescent female. It even feels inappropriate to even ask this question. Not to mention, I have no idea what an IRB or ethics panel would think about it. (Although I'm not trying to collect data.) But I worked with many of these families several times a week for several months and I can't help but wonder how they are doing.

    Thoughts?
    I know this is an older topic, but I thought I would add my two cents worth. I think in any study you have to be very careful about how things are conducted. (My only experience with research study is three years on a project as an undergrad - so not claiming expertise by a long shot) I think the psychological aspect of the patient doctor relationship would make this kind of follow-up a little iffy, even if it were done in the most professional of manner just because facebook is a "social networking" site. The adolescent mind seems to form more of an attachment to people in positions of authority that are respected by the adolescent. Just my experience. The child/young adult might read more into the follow-up than was meant. If an issue EVER came up, would those peers that review your work try to discredit your research claiming some sort of bias toward a research participant? I would just hate to see all of your hard work down the drain for something like that. If I read the rest of the thread correctly, it looks as if you have decided NOT to try this kind of follow-up. I think this is a wise decision.

  11. #11
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    Quote Originally Posted by rohrer01 View Post
    I know this is an older topic, but I thought I would add my two cents worth. I think in any study you have to be very careful about how things are conducted. (My only experience with research study is three years on a project as an undergrad - so not claiming expertise by a long shot) I think the psychological aspect of the patient doctor relationship would make this kind of follow-up a little iffy, even if it were done in the most professional of manner just because facebook is a "social networking" site. The adolescent mind seems to form more of an attachment to people in positions of authority that are respected by the adolescent. Just my experience. The child/young adult might read more into the follow-up than was meant. If an issue EVER came up, would those peers that review your work try to discredit your research claiming some sort of bias toward a research participant? I would just hate to see all of your hard work down the drain for something like that. If I read the rest of the thread correctly, it looks as if you have decided NOT to try this kind of follow-up. I think this is a wise decision.
    You read that correctly. And want to make it abundantly clear to any future people who might read this thread. I will NOT be contacting anybody on facebook.

    Thanks for your input.

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