Advocacy by and for People with ABI (Acquired Brain Injury)
Advocates: Conflicts of Interest
Third Party Advocates
Third party advocates hold themselves out as supporters, proponents, defenders, and champions. They must be completely on the side of the persons that they represent. As "advocates" for individuals with brain injury, they must put first what is in the best interest of their patients or clients.They can have no conflict of interest that might interfere or compete with their first duty, which is to the people they represent, guide, coach, sustain or counsel.
"Advocates" and Advocate Disclosures: Programs, Studies and Trials
I would like to mention to everyone that recently the Brain Injury Network published a new public policy on "Advocate Disclosure". Please see this policy and other policies in our public policy section. We are concerned that many so-called or actual "advocates" for people with brain injuries have conflicts of interest. While they might proclaim they are advocates, they may also have some kind of business interest in being advocates for us. Sometimes these advocates are employed by a business concern. Sometimes the interests of these business entities are not quite the same as the interests of we survivors ourselves, although, of course, there is overlap. However, if there is any possibility of a conflict of interest it should be disclosed by the "advocate" to we survivors or, if necessary in the case of survivors who are not competent, survivor's families. This is what we would like to see, but, of course currently this is not the case. However, I can advise you to be on the look-out when you are weighing your options. I can advise you to carefully assess the credentials of any "advocate" counseling you.
What would be examples of a potential conflict of interest?
1. The "advocate" works for a non-profit, an association for example, and has the job to counsel us or help us. But the "advocate" also has a paid job at a rehabilitation facility and is looking for paying patients. This is a conflict of interest that should be disclosed to the survivor being counseled by the advocate.
2. The "advocate" works for a medical company specializing in securing people to participate in clinical trials. The company even has a "patient advocacy" department that this "advocate" works for. The main purpose of this company is to secure people to participate in clinical trial(s). The company benefits financially by securing people to participate in clinical trials. This should be disclosed up front.
3. The "advocate" works for a company or hospital, etc. that is itself doing a clinical trial. This trial needs study participants. The main purpose of this advocate is to secure people to go into the clinical trial. This should be disclosed up front.
In these cases the "advocate" who is "advocating" for us and/or "counseling" us wants us to go to particular rehab programs or to participate in trials. This is a conflict of interest. It may be perfectly fine to go to that particular program or into a clinical trial, but the "advocate" needs to disclose this true purpose of their "advocacy" and his or her employment with a business concern up front.
The advocates in the above scenarios will steer you to "their program" or "trial" or "study". Since they have an interest other than just you to represent, you must view them with caution. This is not to say that what they offer might not be good for you, but you must make that determination independently with truly unbiased professional counsel. There are many medical considerations to be weighed as to whether or not you should participate, and these matters should be gone over by you and your trusted medical advisors. So please go over any offers for these sorts of programs and trials and studies with medical people you actually know and trust.
