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Thread: MS group discussions on Facebook being studied

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    Distinguished Community Member agate's Avatar
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    Default MS group discussions on Facebook being studied

    Some researchers at Fordham University have been studying MS support group pages on Facebook and have drawn some conclusions based on the degree of "engagement" they've noticed. This abstract (from PubMed, February 12, 2019) is called "Health Topics on Facebook Groups: Content Analysis of Posts in Multiple Sclerosis Communities":

    https://www.ncbi.nlm.nih.gov/pubmed/30741640

    Years ago this board's guidelines included some very strict prohibitions about doing research here. They're still in the Terms of Service, and they are stern:

    If you are a writer/researcher...PAY ATTENTION to this part: Scientific and medical research is essential to improving the well-being of patients and caregivers around the world. Recently, there have been scientific and medical researchers who are increasingly interested in the online interactions between patients and caregivers in public patient support groups such as these forums. As part of this research, such scientists may wish to passively observe the interactions between people online here, and to analyze the general content of the discussions in order to perform a behavioral analysis that may shed light on what patients and caregivers truly need to live healthier lives.

    In other words, "online research" (studying how patients and caregivers interact in public forums like this one) is fundamentally a GOOD thing, since it can ultimately help the well-being of people and advance the understanding of medical science.

    However, there is always the potential for abuse. Researchers may decide to "secretly" record personally identifying information they read, or worse...they may think that the people online are "guinea pigs" to be "experimented" on and could actually make up imaginary topics or illnesses in order to "test" people's reactions.

    Also, people such as students, writers, or market researchers may wish to "use" the forums for their own personal gain by "harvesting" data and publishing the results.

    Such activities do NOT help medical research. And they can HURT the patients and caregivers here by eroding their sense of trust and privacy.

    These forums and chatrooms are FOR PATIENTS AND CAREGIVERS to find support and help. That is the paramount goal. Therefore, it is my OFFICIAL POLICY that I cannot allow anyone to use this forum for any kind of research or behavioral studies (either PASSIVE LISTENING or ACTIVE PARTICIPATION) without my explicit consent or the consent of the specific individuals in the forums.

    If you are a researcher/writer and you wish to "study" these forums to advance some type of medical research or to write some paper/book, you MUST CONTACT ME before you do anything here. You must FAX ME (617-726-2353) a detailed and signed copy of your proposal, including all references, methods, and co-author information. I will review it, and if I feel that it is a valid proposal, I will make a public announcement in the specific forum you wish to study and I will see if the USERS here wish to participate. After I hear from the users, I will make my FINAL decision on whether or not to allow the research/study to begin. You will be required to sign a legally binding document that guarantees you will adhere to our mutually agreed-upon conditions of your study of the forums.

    There can be NO EXCEPTIONS to this. I must protect the true purpose of these forums (patient and caregiver support), and while I value medical research very highly, I will not allow any experiments that take advantage of people to happen here. These forums and chatrooms are filled with REAL PEOPLE. This is a sea of conversations and sharing and support...it is not a petri dish.
    If you are a member of the press and wish to write a general story about these forums/chatrooms, then these rules DO NOT apply to you. However, if you plan to interact in ANY way with the users here, or you plan on including quotes from conversations, or you plan to ASK people questions...then you MUST follow the conditions I have described here.

    If any researcher/writer VIOLATES this policy, I will consider it not only a breach of my Terms of Service, but I will not hesitate to pursue legal action against them. I'm very serious about this.


    Nobody is supposed to be here for the purpose of just studying us. I never understood why that was such a big No-No but after looking at this abstract I'm starting to understand. We really wouldn't want to have someone looking over our shoulders and analyzing our posts. But apparently it's quite all right to do this sort of research on Facebook.

    I'm mentioning this, not because I'm aware of any violations of this rule, but just to point out that this is one important way in which this message board is trying harder than some other sites to keep the users' interests in mind.
    Last edited by agate; 02-12-2019 at 08:57 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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