Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network
Policy dated 10-18-08
Privacy On-Line: Service providers should not associate with on-line social communities for people with brain injuries when said social communities do not attempt to protect the privacy and confidentiality of medical information about people with brain injuries. There are often clear signs when Internet site developers are not protecting the privacy of survivor participants. For example, when an Internet site developer sets up a social community on-line for survivors, asks for and publishes confidential information and medical information about the participants (for example, name and address of the participant, doctor’s name, medication list) this should be a red flag and not permitted or encouraged. Especially egregious is if the site is public access and there is a public archive with survivors’ private, confidential information. The fact that certain survivors volunteer such information should not absolve service providers from their duty to keep such information confidential and secured in some manner. This is because some survivors lack judgment to recognize the security risk of volunteering such information on a wide-open Internet website.
Additionally, other service providers should not associate with (link to) on-line social communities for people with brain injuries when said social communities operate a public access Internet site and make no attempt to conceal the identifying information about people with brain injuries, and/or do not caution participants to consider protecting their private confidential information on-line. Service providers should also not connect with on-line communities that seek out and publically post private confidential medical information about the people with brain injury. Any sites that are operated under contract or via grant from the U. S. government should be required to follow privacy protocols or else lose any government funding secured to help operate such on-line social communities for people with brain injuries.