If you want to join social on-line communities, check them out, thoroughly, before you join. Also, find out what kind of credentials the administrators of the site have, if you can. And when in on-line groups or communities:
(1) Sign up using an alias name.
(2) Use a private profile. (Make sure your profile settings are private. For example, in Facebook groups, make sure that the setting in your Facebook profile does not allow Facebook to share information about you to third parties. Instruct Facebook not to share your information.)
(3) Do not give out your address, phone number, or birth date.
(4) Do not use your real name or your parent’s or other relatives’ last names in discussions.
(5) Don’t use your primary email address, especially if it contains your actual name. Create easily disposable secondary (subaccount) email addresses to use instead.
(6) Don’t share medical data about yourself by filling out on-line forms from social communities. For example, don’t share your insurance particulars, your doctor’s name, your medication list, etc.
(7) If a site allows you to modify your privacy and archival settings (a good sign) check them, because chances are the default setting is to allow your content to be accessible to the entire Internet community, and you may wish to tighten up who may view your posts.
(8) Just remember that if you share any content with anyone, anyone at all, he or she will be able to share your material elsewhere (even though that would be impolite it happens all of the time), so be careful what you write on the Internet. You never know where it will end up, and once you have written something it may be on the Internet for eternity. Be careful! Be watchful! Be wise!
Please pay particular attention to guarding your privacy and confidential information on the emerging “social communities” for tbi and other forms of abi.
It has come to our attention that your privacy is not always safe-guarded, as a matter of fact; your privacy is sacrificed on at least three of these new social communities that we know about. Messages you post can even come up in Google searches, along with your Internet name. For example, you might post about your fatigue problem due to TBI, or your emotional outbursts, or your seizure issues, or your incontinence issues, etc. You might be candid about issues with your spouse or kids, or legal challenges you are facing. But if you are posting on a public board, it may or may not be accessible to everyone in the outer world, depending on the settings the administrators of the social community, group, or board have set.
Perhaps someday someone might look up your name on the Internet, for example, a prospective employer, the lawyers for the opposition in your tbi-related court case, or the neighborhood busy-body, etc. Do you really want them reading all about you and your issues? In five or ten years, do you want your current commentaries of crisis or turmoil due to ABI to still be on the Internet, accessible, and archived someplace for posterity? Maybe you do, in which case you probably have your documented record on your own public website or blog. But if you are someone who wants anonymity, and are just seeking social support on-line and/or confidential interactions on-line with a few select people; then watch out where you post using your real name. As a matter of fact, don’t use your real name. And, watch out how much information you give out.
And beyond that, do not make it easy for spammers and identity thieves to access your personal confidential information. Anyone on the Internet really concerned about your welfare is not going to make it easy for the bad guys to harvest information about you. For example, I was looking at a new social community for tbi the other day. I was astounded to discover that I could access peoples’ names, birthdates, and additional confidential medical information. I’m not a member on that so-called survivor site, but I could do that, and to do so didn’t take much effort at all. That means anyone on the planet Earth can do that.
Also, why would a survivor social site be classifying survivors as patients? Why would such a site want you to list your medications, your doctor’s name, and whether or not you carry insurance? Does that sound like any survivor group you’ve ever been on before? Doesn’t it sound more like a medical site? And why would there be a bunch of researchers on the site? They must be researching something or someone. Could it be that they are there to research you? Did you know? By law, they are supposed to let you know. You have to give permission if you are the subject of research here in the USA. I also noted on that on this so-called survivor site, that the survivors are expected to disclose all of this personal information, but the researchers only have to provide minimal information, for example, the institution they work for. That certainly sounds like a two-tier system to me, with the survivors getting the short end of the stick.
If it is a medical site, then why is “patient” (their word) confidentiality not being protected? Why isn’t this private information being secured? Why is it so completely accessible? I was told by several people in government that this appeared to be a violation of the HIPAA patient privacy law. However, I was also told by one service provider that since the survivors have voluntarily typed in their personal information into the social community query boxes, it is no violation of the law, as the survivors are voluntarily giving the information. That person’s rational is that since the survivor has done his or her own disclosing there is no violation of patient privacy laws.
So, I ask you, survivor of brain injury, are you really aware that you have given permission for the world to see your data because you filled in the boxes on a form in an on-line social community? Don’t fill in the form. Don’t give the information if you aren’t fully comfortable with that idea. Actually, even if you think it’s ok, I am here to tell you it is not OK. Don’t share your confidential medical information and personal data on-line unless you are certain, absolutely certain you are dealing with “a trusted source” and, a source you trust!
Also, don’t believe it if an avatar, from a so-called survivor site, comes calling to tell you that he/she is a survivor and has discovered this wonderful new survivor site. How do you know who is behind the avatar? For all you know, it could be a researcher or the administrator of the site, who has a business interest in getting lots of people to go to the site. Be careful. Be guarded. Even if the site appears very well constructed and has many modules (photos, instant messaging, journals, friends, etc.) be careful, because the site may appear to be a mansion on the outside, but a mansion with no locks on the doors. So, be sure it’s safe before you move into the mansion!
Also, if there is research going on via the site, that must be made crystal clear to everyone on page one of the site. PAGE ONE. Potential participants must know that the site is a conduit for research before they have disclosed even their email and name. Don’t give them even that much information if you don’t want to be a part of a research project. The exact nature of the research or study must be disclosed up front. Who is doing the research? Who is paying for the research? All participants, (that would be you, survivor!) must give permission. And if the site is a place where researchers can connect with survivors and move on from there in some future research project or to some other service that is being contemplated or offered, that needs to be disclosed up front as well.
And really, I do not think that social communities that are operated by service providers should cast themselves as survivor sites. I don’t think they should use the “We” word, as if they were survivors. Because, folks, they are not. They are service providers!
Don’t share your confidential data with people you don’t know. Anybody nowadays can create a social network on-line. Anybody can claim to operate a survivor social network. And perhaps they do operate a social network, but that doesn’t mean you can trust that everything is run with your security in mind. So be careful.
If you want to join social on-line communities, check them out, thoroughly, before you join. (However, I must say it might be hard to check them out if they are cloaking who they really are, so know that you are taking a chance when you join any of them..) Be careful! Be watchful! Be wise!