Criteria for Rating Brain Injury Web Sites, Online Social Communities, and Additional Service Providers
We are rating brain injury survivor sites and online social communities. You can put these criteria to work yourself, whenever you contemplate joining some online community. Here our criteria:
WHO OPERATES THE SITE?
1. Are you able to ascertain who operates the web site?
2. Are you able to ascertain if the operator has any "special" brain injury knowledge (professional expertise) or training?
3. Who operates the site (service providers, family members, survivor or survivors, etc.)?
4. Is this site transparent (open) as to the purpose of the site?
YOUR PRIVACY.
1. Does this site publish a privacy policy?
2. Does this site allow search engines (Google, Bing, Yahoo, etc.) to publicly index its content, including content from you?
3. Does this site tell you up front that it allows search engines to crawl "its material" (in other words, your posts)?
4. Does this site's management give you information about how to protect your privacy on this web site?
5. Does the site encourage you to set a privacy setting you can adjust to give yourself more privacy?
6. Does this site appear to respect your privacy concerns?
7. Will this site even allow you adjust your privacy settings to more private settings in order that you can protect your privacy when you post?
INFORMATION ACCESSIBILITY.
1. Does this site encourage you to share your email address and then publish it online on a public board for the whole world to see, including spammers?
2. Does this site encourage you to share your name and other information about yourself, such as your address, medical condition, insurance, etc.?
3. Does this site post your private information you have shared in a public (non protective) way?
4. Does this site or its parent agency appear to be conducting "data harvesting" about you? (Is the site seeking a lot of private information from you, such as your name, address, medical history, insurance, etc.?)
ACTIVITIES OF THE SITE YOU SHOULD BE TOLD ABOUT UP FRONT.
1. Is this site harvesting patient data about you to sell to third parties?
2. Is this site conducting research on you?
3. Is this site assessing you for your value as a potential research participant, affiliate service provider patient or legal client?
4. Does this site share information about its TBI survivor users with third parties (such as researchers, businesses, etc.)?
5. Does this site appear to have a double standard, protecting the identities of service providers, but exposing TBI survivor data?
HONESTY AND CANDOR.
1. Does this site give full contact information, such as its address and telephone number?
2. If you email the site or service provider entity with questions about the site's Internet privacy, archive and search engine settings, will the site or provider respond to your queries?
3. If you call and ask the site administrator if the site harvests data about tbi survivors and sells it to third parties or makes it accessible to third parties, will the site administrator tell you?
Final Note: Read the privacy policy of the site or provider, if the site even has one.