Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network Policy dated 6-13-09
Survivor Social Communities On-Line: Social communities funded by or operated by medical or other service providers (doctors, psychologists, university researchers, etc.) should not hold themselves out as "survivor sites" operated by "users," "consumers," or "survivors." Examples would be for-profit or government-sponsored sites such as "wearetbi.org". If an online social community receives its funding to operate from a department of government such as the Department of Defense (example: "brainline.org") this source of oversight, funding and control should be clear on the website.
Participants (people with brain injuries) have a right to know if their on-line "survivor" social community is being monitored by researchers. Participants have a right to know if information about them is being harvested for any purpose, for example, for surveillance, data collection, behavioral research, medical research studies, or medical clinical trials. Participants should be advised that their participation in a social community has made them a part of a research study.
Full disclosure of the funding and purpose of an on-line social community should be prominently displayed on the homepage of the social community site. Of particular interest would be these potential scenarios:
* A purpose of the community is to solicit participation of survivor participants in clinical trials.
* A purpose of the on-line social community is to conduct research on survivors.
* The source of the funding for the "survivor" social community is a medical provider, a drug company, the government, or a for-profit business interest.
* Data about participants in the on-line forum is being harvested for research studies, government surveillance, databases, etc.
* The site, site traffic and messages are being monitored by researchers.
* The site represents an aspect of a research project.
Participants on such social community sites should be fully informed as to the full nature, purpose and activity of the site. The particulars as to who is conducting the research and who is paying for the research must be indicated. Researchers must seek and get express approval from each participant who they are monitoring, researching or including in databases. Site administrators and researchers should disclose any underlying rationale for the social community, such as efforts to harvest survivor names, addresses, medical conditions, etc., for the purpose of placing the survivor in a database or potentially securing that person to participate in a medical or other research clinical trial.