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Research, Clinical Trials,

Studies and Programs

"Advocates" and Advocate Disclosures: Research,
Clinical Trials, Studies and Programs

Fish in the Net

Understanding "the system" will help people with brain injuries be more careful when they are approached by "an advocate" to participate in various things. This type of "advocacy" is pervasive through the system of care for people with brain injuries. It is the norm. Here is a little more on why it is this way.
Everything revolves around money. There is a lot of money in conducting research upon us. Medical systems (hospitals) vie for U. S. department grant money. They can only get the grant money if they there is a research component in what services they deliver to us. Departments with these research networks include the Dept. of Health and Human Services, the Dept. of Education and the Dept. of Defense. Additionally others besides hospitals and regional medical networks vie for money for some programs. There are other ways that medical concerns can get money from the U. S. government for research on or about us, but these are some major ways.
We at BIN believe research is a very, very good thing and helps our community. Without the research there would not be medical advances. However, we also believe that the way this system works ought to be better understood by us so we can see why there is so much activity to create social networks, etc. for us by various medical people, hospitals, doctors, psychologists, etc. They cannot do their research without patients, frankly, study participants. They have to have us to test out treatments, therapies, medications, and medical devices.
So, in addition to the medical systems themselves looking for patients to study, there are now also companies that are looking for patients for the medical system. Where are they looking? Well, for one, they are looking on the Internet. They are looking in our online social communities. They are building social communities of their own on the net to "catch" us. (Sabisue humor: We are fish in the net.)
So, basically we survivors all have to be careful and know exactly who we are dealing with and why they might be interested in our medical history and private information. One warning sign is if the "advocate" or social community is willing to ask people to state their private, confidential information in a public database that appears online for anyone on the planet earth to see. Clearly in such a case the medical provider or "advocate" is so interested in gaining this information about people that they are willing to ignore attempting any kind of protection of survivors' private information online.
(Rationale of the medical providers: the patients have voluntarily relinquished the information themselves to the social community database. Therefore, the medical providers operating the online community believe there is no violation of HIPPA privacy rules. We at BIN say, however, that they should more carefully guard this information from us that is about us and not make it so public. Have some sense of helping the patients keep some of their identifying information and medical particulars to themselves, or at least on a more private board.)
One of the main transgressors is wearetbi. Wearetbi is actually funded by a medical system in Pennsylvania that is getting money from the federal government (Dept. of Education) to study us. Also funding wearetbi is the Merck Drug Company. We presume that they are interested in tapping the database of information about survivors that is on wearetbi because Merck may also be conducting studies regarding particular drugs. At the least they must want customers to whom they can advertise to buy their medications.
Wearetbi asks survivors to divulge their medical condition, the name of their doctor, the medications they take, etc. This data can be in private or public profile. Unfortunately, many survivors choose public profile, either intentionally or inadvertently, thus exposing their private, personal, confidential information to scrutiny by anyone accessing the Internet. But for those savvy enough to choose "private profile", that does not necessarily mean private. We would be very, very surprised if that private data is not being monitored or shared with the medical system sponsoring the site and Merck, too.
Well, to repeat, it is ok that all of the medical systems have these clinical trials going. It is good. Trials bring advances in care that help improve outcomes for us survivors. We at BIN just don't like that the medical systems are now creating social communities to bring us to them. That is a pretext, really, for what they actually want, which is to get us into their trials and studies. (Sometimes the social network itself is a research device where we survivors are being monitored and psychological research is being conducted.) Also, we do not like that the medical providers operating these social communities are willing to sacrifice the privacy of all of these users/consumers/members/participant s by asking for all of this information online in an open forum where the whole world can read private medical information about people.
Additionally, we think the way they are doing this they are going around the survivors' own private medical teams. Everyone should go through their own trusted doctor, someone who knows them well and can help them make an informed decision as to whether or not they should participate in a study.
In closing: The marketing to get us has become very aggressive. Steps to protect survivors' confidential information even online must be taken by the medical research community. Research is a good thing, but survivors must be watchful, mindful and careful when online and when dealing with "advocates" from the medical community.
See also: Brain Injury Network Public Policy on Advocates: Disclosures.