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Online Brain Injury Community
This section explains why people with brain injuries have to be careful where they post online.
It bears repeating that once someone posts on an Internet social community the poster's content is the property of the website and not that of the individual who has posted. Again, any posted content becomes the property of the website once it is on the website. Property rights appear to trump privacy rights.
People who have posted on a public Internet forum have given up their right to privacy by posting on the public forum. And the people who operate these social communities online know that. So even if a person asks that his or her posts be taken down from the website the webmaster/site owner is under no obligation to do so.
Many people with brain injuries are reporting to us that even though they have left a particular online community, the web administrators continue to display their images and posts sometimes in spite of their express wishes to have that content removed from the site. Therefore, it looks as though these sites still enjoy the participation (and "approval") of the individual who left the group. Sometimes that individual left because he or she had misgivings about the group. However, that person is forever associated with the group since the group owners continue to display that person's image and posts. (Additionally, it will continue to look as though the site enjoys the approval of that person, even though that might not be the case.)
We have known people who have complained to webmasters and asked that their identifying information and posts be removed from the site, but to no avail. Of course the webmasters want to continue to display the content, because said content can attract more brain injury survivors to the site. These kinds of webmasters/group owners are not interested in deferring to a brain injury survivor's wishes that his or her image and content be removed from the site. They are only interested in promoting their site and/or business and/or nonprofit organization and they do not appear to be concerned with the wishes of the person who wants to dissociate from the site. So, watch out for these kinds of sites that are willing to use people with brain injuries for their own purposes.
These kinds of sites and site administrators clearly do not care about the wishes of individuals who have posted. They are really only concerned with "their web site" and whatever business or other motive they have, not what would be in the best interest of the person with the brain injury who happened to post on the site at one time or another.
Also, many people do not realize that their posts are public domain on some of these sites, on most sites as a matter of fact. When they find out they were not posting privately and ask that their (what they thought were private, internal) posts be erased from the site, they still cannot get the webmasters to comply.
So, it is best not to post what you think is private and confidential information on web sites on the Internet. Don't take the chance, because your private thoughts may be all over the public Internet, permanently. And there is virtually no way to undo that under present law. Also, several people with brain injuries have come forward to tell us that the "other side" in a lawsuit is using their posts on public Internet social communities in court against them. This is an example of people posting too freely and then paying the price for posting too freely. There can be all kinds of repercussions to posting on some of these Internet social communities. So, be careful. There are some evaluative ideas in the article below.
5-6-10
Dear ABI and TBI Survivors, you should assess carefully any online brain injury community that you choose to join. The key point is that you should affiliate with sites that put your privacy, confidentiality and safety ahead of any other interest. Prior to joining any online group, please evaluate the following.
1. Who operates the online brain injury community? (The community may also be called brain injury social community or sometimes tbi social community.) Is the community operated by a
Book author?
Business or nonprofit organization harvesting patient data? (Organizations sometimes seek out information about you that they can and do sell. Organizations sometimes “sell” their databases.)
Brain injury rehabilitation facility?
Family caregiver or family caregivers?
Government? (This might include a local, county, state, province, or national entity.)
Group of researchers? (For example this would include university researchers, hospital researchers, or professionals with a government research grant to study people with brain injuries.)
Hospital system?
Drug manufacturer company conducting clinical trials?
Hospital network or system?
Nonprofit organization? (The likely scenario is that the agency has the mission to assist people with disabilities or people with brain injuries.)
Patient recruitment company? (This would be a company whose business purpose is to recruit people into research studies.)
Professional person or persons? (This might, for example, be a doctor or neuropsychologist or group of doctors or neuropsychologists with a specialization having to do with brain injury or brain injury rehabilitation. This also might be a lawyer in law practice perhaps looking for clients or good legal actions to pursue.)
Researcher? (This might be a neuropsychologist, graduate student, doctor, etc.)
Researchers (This, for example, could be university researchers, hospital researchers, or professionals with government research grants to study people with brain injuries.)
Service provider organization?
Social media company? (This might include a company affiliated with a television or radio station.)
Survivor?
Survivors in informal affiliation?
Survivors in formal association? (This might be, for example, in a non-profit organization.)
U. S. government? (Departments operating or paying for – either directly or indirectly - online survivor brain injury communities include the U.S. Department of Education, the U.S. Department of Health and Human Services and the U. S. Department of Defense.)
The list above is intended to give some examples, but is not exhaustive. There are others operating brain injury online communities.
2. Does the online brain injury community take steps to protect your privacy online?
Does the entity have a privacy policy? (If there is no privacy policy that is a sign that the agency may be harvesting information about its participants. If the privacy policy suggests that information on the site “is shared” that is a good indicator that information you give is shared elsewhere, for example, with advertisers, researchers, businesses, etc.)
Does the entity appear to sell data about you elsewhere? (You might be able to detect that just from the nature of the co-sponsors of the site.)Does the entity have advertising directed at you? (For example, if you share certain information, does advertising with some kind of connection to what you said pop up when you are on the site?)
Does the entity have more than one class of membership? For example, are the survivor accounts open access, but the researcher or other third party accounts are closed and private?
Does it appear that “behind the scenes” screening (tracking, surveillance, etc.) is going on?
3. Does the online brain injury community freely share who operates the web site and why?
Does it list sponsors? Does it share the name, address, and tax status of the underlying entity (for example, nonprofit charity) that operates the online brain injury community? Are you able to ascertain the name and location of the webmaster and/or the underlying entity that operates the online community? If it is clear who is operating the community and the purpose for the community that is a good sign. If you cannot find out who operates the community that is a bad sign.
4. Does the online brain injury community appear to be operating with an open, accessible Internet archive?
Does it appear that the content, which would include any messages that you write on the community, is “Google indexed”? If so, Google, Yahoo, Bing and other search engines are able to archive all of your messages. This means your messages will be in the public record, accessible by anyone, permanently. Do you want that, or do you want more privacy?
5. Ask yourself whether or not you want to be participating in an open venue, or if you would prefer a more private setting.
Ask yourself whether or not you want your messages, etc. monitored by researchers, companies, associations, etc. Ask yourself whether or not you want all of your messages to be part of a public archive forever more. You can check the privacy policy of the site, if there is one, to see how the messages are archived. If there is no privacy policy addressing this concern that is a good indicator that the site is probably public archive.
6. Does the online social community demand that you register using your real name?
Perhaps you would rather be more private than that? Are you interested in your privacy and maintaining some confidentiality regarding your situation? Then you might prefer a social community that does not demand that you share your real name. You might prefer a site that accepts, even prefers, that you enroll using an alias identity.
7. If the social community holds itself out as a non-profit organization or as operated by a non-profit organization, can you see evidence of that on the site?
Does the site use an “.ORG” URL? (That sometimes means it is a non-profit, but not always. Agencies and persons who are not “organizations” are increasingly using the “.ORG” in their URL.)
Does the site display a Section 501(c) (3) tax exempt status ID from the US Internal Revenue Service? This is indicative that the site is operated by a non-profit in the USA.
Does the site show where the underlying entity operates? Does it show the entity’s state non-profit corporation registration number?
8. How does the Brain Injury Network measure up on the above criteria?
The Brain Injury Network is a non-profit organization operating in California, USA. Our IRS Code Section 501(c) (3) Tax ID (tax exempt status as non-profit) number is 68-0030611. Our California non-profit registration number is: C1255505.
9. What are the particulars regarding the Brain Injury Network's online social community, entitled SABI (Survivor Acquired Brain Injury)?
We maintain a “private archive” on our SABI Yahoo forum. (In other words, we do not have a “public archive”. We have a private archive.) We do not allow Google, Yahoo or Bing or other search engines to index the messages in SABI. However, please see #10 below.
We prefer that people who want to join our SABI forum enroll using an alias. We do not seek out nor do we sell private confidential information about our participants. We are not researchers. We are not affiliated with any for-profit business concern, doctor, neuropsychologist, association, service provider, hospital, recruiting company, television station, social media company, or government agency.
We are survivors of brain injury. We really are a TBI survivor and also an ABI survivor organization. This is the real thing. There is no cloaking as to whom we actually are going on here.
10. What Internet company hosts your social community, and what is the Internet company's privacy policy?
Please check the privacy policy of the company. Investigate the settings that relate to your profile with the provider. In many cases your profile, messages and other content will be open to third parties by default. You will need to go in and change the settings to private settings.
See also: Protect Your Privacy.
See also: Policy regarding Social Communities Online.
Note: We also now operate groups on Facebook. We do not operate public support groups on Facebook. We operate private groups where comments are only accessible by group members. Membership is public, but content is private in these kinds of Facebook groups. (However, unlike many of the other social communities online that continue to trade on brain injury survivors after they have left the group, if someone withdraws from a Facebook group his or her image no longer appears on the homepage of the group.) Members must meet criteria to be able to join our groups. We rely on an honor code that members are who they say they are, namely brain injury survivors. Regarding all of our online social communities, please see our brain injury forums page.
