Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 9-12-2009
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1. Clinical Research: We believe in complete transparency as to who is conducting the research. We object to the utilization of survey monkeys online by third party for-profit recruitment companies whose whole purpose is to find and secure potential patient volunteers for clinical research. We object if the purpose of said survey is not clear and if subtle strategies are employed to attract volunteers into the surveys.
2. Conflict of Interest in Medical Research: We object when corporate sponsors (pharmaceutical companies, biotechnology companies, etc.) of medical research contribute to clinical trial design or are allowed to access trial data or are permitted to interpret trial results. We object if they are allowed to review studies prior to publication in journals or are allowed to withhold publication of study findings from medical journals. We support “Good clinical practice.” Both positive and negative results of studies must be reported.
There must be complete transparency as to who is conducting research.
We object to the stealth collection by third party patient recruitment companies of personal health information in on-line social media, especially on so-called patient sites. When the purpose of the social media site or on-line survey document is to attract patients to clinical trials that should be transparent.
3. Patient Recruitment andCovert Devices Online to Recruit Patients to Medical Research Studies: We support transparent, straightforward, overt, and aboveboard solicitations for potential patient volunteers for clinical research. We support recruitment that clearly expresses the intent of the solicitation. We frown on tricky research monkey surveys, etc., online that do not disclose that the main reason for the survey is to seek out and locate potential patient volunteers for medical studies. We especially object to the utilization of survey moneys online by third party, for-profit, recruitment companies whose true purpose is to find and secure potential patient volunteers for medical research. We object if the purpose of said survey is not clearly enunciated and if subtle covert strategies are employed to attract volunteers into studies. We expect survey solicitations to be presented without evasion. We expect survey solicitations to clearly spell out their true purpose.
4. Gold Standard Research Studies: We support gold standard studies with double-blind, placebo controlled, randomized trials. Studies including clinical trials may involve the scientific testing of drug or drugs, surgery, medical devices or new methods of diagnosis.
We object to studies in which pharmaceutical companies or other corporate sponsors of medical research contribute to trial design; have access to trial data or are permitted to access trial data; or review or interpret trial results prior to publication in medical journals. Corporate sponsors of medical studies should not be able to withhold publication in medical journals if results were negative. Sponsors of studies should utilize Good Clinical Practice (GCP). Both positive and negative results of studies must be reported.
We object to aggressive patient data harvesting online which lends itself to exposing private, confidential information about survivors to the public. We especially object to the operation of so-called consumer or survivor sites created as a way to attract people to a patient data harvesting business. We wish that gold standard level researchers would find a less covert way of attracting people into their studies. Potential study participants should not be treated as though they are some kind of marketable commodity.
6. Patient Empowerment: Patients must be empowered to make decisions based on the best evidence. Full disclosure regarding treatment options, tests, medication, and surgical risks etc. must be made to patients with brain injury by medical personnel and scientists.
7. Patient Recruitment Methodology Online or through Social Media: We support full disclosure and transparency regarding patient recruitments for clinical trials and other research from patient advocacy organizations and departments, social communities, surveys and web sites. Individuals with brain injury are entitled to clear, honest, straight forward interaction and collaboration with researchers. Even the casual visitor to a web site has the right to know if he or she is being monitored and his or her private information harvested for the purpose of research or data compilation.
As potential research participants we are entitled to know if we are being recruited, or targeted as potential study subjects (via online survey moneys, or on Internet social communities, etc.) by media device manufacturers, medical professional associations, medical center and university researchers, patient advocacy organizations, pharmaceutical concerns, the government, or by third party patient recruitment businesses.
8. PostConcussion Syndrome: PostConcussion Syndrome originally referred to a symptom complex subsequent to a minor or mild brain injury (concussion). The clinically recognizable features include headache, dizziness, fatigue, personality changes and other symptoms. When (some or all) of these symptoms present subsequent to a concussion the condition is called PostConcussion Syndrome. However, the Syndrome is now also diagnosed after more severe types of brain injury. The Brain Injury Network recognizes that many survivors in our community have “PostConcussion Syndrome”. We find nothing controversial about this diagnosis and we applaud doctors in the medical community who are willing to diagnose this syndrome.
9. Post Traumatic Brain Injury Syndrome, or Post-TBI Syndrome (PTBIS) Diagnosis: We would like the medical community to adopt this syndrome as a viable diagnosis and we encourage research and treatments for this condition.
Proposed Brain Injury Classification: Post Traumatic Brain Injury Syndrome or Post-TBI Syndrome (PTBIS)
Introduction. We would like nothing better than if the most esteemed medical provider professional associations in this world would come out to use the term, “Post TBI Syndrome”. And please then do define PTBIS in the most medically proper and proven manner. We believe that the terms “Post TBI” and “Syndrome” should come together in a medical classification that defines our situation. “Post” means after. “TBI” means traumatic brain injury. “Syndrome” means a combination of signs and symptoms that are indicative of a particular disease or disorder. Since the post TBI period may involve disease processes, disorder processes, and behavioral processes attributable back to TBI, we believe that using the term “syndrome” is more reflective of our situation than merely using the term “disease process”.
This definition is being put forth by the Brain Injury Network (a survivor advocacy organization) for analysis, debate, review and affirmation by the medical community. As brain injury survivor advocates, we favor the use of accurate terminology in medicine. We favor the use of the terminology that most reflects the latest medical research. So, would the medical community be so good as to consider, endorse and emphasize this phrase, Post TBI Syndrome?
When the medical community decides, if it does, to support this terminology, you might care to refine and expand on a definition such as this one:
Post-Traumatic Brain Injury Syndrome, also known as PTBIS, is a set of symptoms that a person may experience for weeks, months, years or life after a traumatic brain injury (TBI). Some symptoms may manifest a substantial period of time (months or years) after TBI. PTBIS may occur subsequent to mild, moderate, and severe cases of traumatic brain injury. The condition can cause a variety of symptoms: cognitive, such as difficulty attending, concentrating, executing, focusing, judging, processing, remembering, speaking, tracking, or understanding; behavioral, such as emotional lability, irritability, mood swings, or outbursts; or physical, such as endocrine dysfunction, fatigue, headache, incontinency, nausea, seizures, sleep disorders, or tinnitus. There are many other possible symptoms. Disorders associated with PTBIS might also include but not be limited to perceptual-motor disorders, somatosensory disorders or vestibular disorders. PTBIS might also periodically cause secondary psychiatric disorders, such as depression or isolating behaviors, to exhibit. Diseases associated with PTBIS might include early onset Alzheimer’s disease or early onset Parkinson’s disease. There is no treatment for PTBIS itself; however, symptoms can be treated. It is partially known what causes PTBIS. Physiological brain damage from traumatic brain injury causes PTBIS.
Post TBI Syndrome verses Post Concussion Syndrome.
This term, PTBIS, would be broader than postconcussion syndrome, which, if you were to think about it, should only refer to postconcussion cases. It seems to us that someone who had a very serious tbi, was in a coma, had brain surgery, or significant skull fracture, etc., didn’t have merely a concussion. But many people with tbi of this level are eventually diagnosed with “postconcussion syndrome”. That just doesn’t sound quite technically correct, even to lay people such as ourselves. Perhaps this term is utilized because the medical community has not settled on a more descriptive term? Well, we would like to offer, for your consideration, “Post Traumatic Brain Injury Syndrome.”
Please use a term that is more reflective of the entire population of people with traumatic brain injury (whether from concussion, coma, mild, moderate, severe, or even catastrophic brain injury, open, closed, diffuse, or penetrating head wound, etc.) Please use the term “TBI” in the syndrome. This syndrome does not merely include cognitive impairments (memory, judgment, etc.) behavioral disorders (irritability), or physical symptoms (headaches). It also might include balance and coordination disorders; hyperacusis; incontinence; mood disorders; motion disorders; neuroendocrine dysfunction; perceptual motor disorders (relating to gross and fine motor control); seizure disorders; sleep disturbances; somatosensory disorders (relating to auditory, visual and tactile processing); spatial disorientation; tinnitus; vestibular disorders (vertigo, dizziness, etc.);and additional disorders. Additionally, there is some evidence that some persons with PTBIS are more likely to develop early onset Alzheimer’s disease and/or post traumatic Parkinson’s disease. Research findings show that many people who sustained a TBI ultimately experience aspects of “Post-TBI Syndrome”.
Now that the medical research has caught up with what we people with brain injuries have reported as our symptomatology for many years, please more accurately reflect the extensive constellation of potential TBI related diseases, disorders and conditions with appropriate, descriptive, all-inclusive terminology. Please use “Post-TBI Syndrome”. Persons with Post-TBI Syndrome may or may not report particular symptoms that are on the ever growing, scientifically-substantiated list. But here now will be a term, a classification, which encompasses the cognitive, physical and assorted other potential short and long-term dysfunctions that may arise out of TBI. The position of the Brain Injury Network is that the existence of Post-TBI Syndrome is already proven. One doesn’t have to be a doctor to see that this, whatever it is called, is already proven. The correlations are already there, as reflected by extensive “state of the art” medical research.
The Plethora of Terms in Use.
Additionally, currently when it comes to Post-TBI there are so many medical terms in use. For people who regained consciousness, one sees postconcussion syndrome; post minor traumatic brain injury syndrome; mild traumatic brain injury (mtbi); postconcussive syndrome (pcs), (or persistent post concussive or persistent post concussion syndrome when symptoms last over six months); postcontusion syndrome or encephalopathy; posttraumatic brain syndrome; and nonpsychotic status post commotio celebri syndrome. Perhaps in part because of our efforts here at BIN some medical authorities are thinking perhaps a post coma syndrome might be a nice addition to the terms in use. Phrases are spelled out as one word or as two words with a hyphen; there is not even agreement on the spelling of these terms. It would help if there were consistent spelling and capitalization. (Yes, simple consistency in punctuation and spelling would be helpful to the patient population.)
There are also more specific designations related to the post-tbi period that emphasize particular aspects of post-tbi. Some of these include post-traumatic epilepsy or seizure disorder; post-traumatic headache syndrome; post-traumatic hypopituitarism; post-traumatic meniere’s syndrome; post-traumatic parkinson’s syndrome; post traumatic pituitary dysfunction; post-trauma vision syndrome and the list goes on and on. Doctors and medical researchers need the specifics to this level of sophistication. However, we patients need one term, one fairly easy term, for us to process what is happening to us post tbi. Well, at one time “brain injury” or “traumatic brain injury” was enough, but no longer what with this proliferation of “post-“ terms. As a way to help individuals with this issue focus, understand and cope, the Brain Injury Network would like to see the introduction and utilization of “Post TBI Syndrome”.
Why Patients Need One Umbrella Term such as PTBIS. Here are some additional reasons why patients need the term “Post TBI Syndrome”. The decision as to whether or not we patients have physiological or psychological issues is often uncertain, unclear, misdiagnosed, misinterpreted, etc. Many individuals with traumatic brain injury who are very distressed from trying to cope with their brain injury related issues are additionally distressed that they have not been believed by their medical providers, family, etc. Some patients can’t even themselves quite grasp what is happening or what has happened. They need clarification. They don’t need ten different diagnoses for what amounts to about the same thing. Oh, they might have been told cerebral contusion; cerebral concussion; concussion; coma; mild traumatic brain injury (mtbi); skull fracture; diffuse brain injury; axonal shearing brain injury; postconcussion syndrome; traumatically induced Meniere’s syndrome; explosive head syndrome; photophobia; post traumatic stress disorder (ptsd) or head trauma or even psychological causation somewhere along the way. Or they might have been told several of these things by various specialists they consulted. Wouldn’t it be nice if they received a consistent answer such as “Post TBI Syndrome”?
The Support of the Medical Community is Needed. Treat for the specific disorders within the syndrome, too, but start by recognizing the syndrome. Yes, it seems to us that patients need strong medical advocates who can zero in on and communicate one concept. And let us face it, “Post TBI Syndrome” should and could come into usage as a term without the “It is a controversial diagnosis” baggage that PostConcussion Syndrome managed to pick up in earlier decades in times when the medical scanning technology did not exist to prove the merit of the condition. It appears that technology has caught up. Many studies have now concluded that tbi can lead to long-term, even lifelong complications.
In conclusion, it is now time for the medical community as a whole to step up and clearly define this syndrome that we patients say and many of the medical scientific papers hint at. This Post Traumatic Brain Injury Syndrome can affect people who have sustained a traumatic brain injury for many years, if not life. It is time. Dear medical community, there’s the proof now. Please let the terminology and diagnosis regarding the Post TBI aspects of life reflect the latest scientific findings. The patients need this. The science warrants it. Thank you.
10. Social Community and On-Line Networking Websites: We want more transparency on social community websites. We want proper safeguards to ensure users’ profile information isn’t shared with developers or business concerns. We want sites to explicitly and fully disclose if they are “harvesting patient data”, and for what purpose. We want users to have the information they need to make decisions as to how widely they share personal information online.
11. Stigma and Brain Injury: It is not disgraceful nor is it shameful to have a brain injury. However, we recognize that sustaining a brain injury can be a stigmatizing event for a person. We applaud any efforts by people and organizations in society to help reduce and eliminate the stigma that is attached to brain injury. We feel that this stigma can best be eliminated by improving the societal and medical response to brain injury akin to what has been done in the last several decades to reduce the stigma attached to mental illness issues.
Raising public awareness about brain injury, in order that the condition is better understood, will reduce stigma. Educating the public about brain injury will reduce stigma. Properly assessing and treating survivors and validating their concerns will help reduce stigma. Empowering survivors to know that they do not have to hide, that they can “come out” about brain injury, will also reduce stigma.
12. Survivor Community Priorities: Access to counseling, education, information, medical treatment and mental health services. Affordable clothing, food, health care, housing, rehabilitation services, and transportation. An accessible world. Assistive devices and medical equipment. Assisted housing. Caregiver help. Community reintegration programs. Crisis management. Disability insurance. Dignity. Disability Insurance. Educational programs dealing with health, prevention, public awareness and safety. Help negotiating the system. Help transitioning from the hospital and rehabilitation setting to the community (community reintegration services). Honesty. Independent living skills training. Information and referral services. Insurance covering rehabilitation, for example, cognitive, occupational, physical, and speech therapy rehabilitation. Insurance in spite of our having brain injuries. Job training, follow-along and accommodations. Medical insurance. Peer support. Programs to teach people with brain injuries strategies that help them overcome cognitive, physical and behavioral issues. Programs to apprise us of our strengths and to help us utilize our strengths. Ombudsmen. Research. Respect. Safe programs. Special interventions for survivors who are isolated, disabled or homeless. Universal health care.
13. Support Group Facilitation: People, and this includes survivor "advocates" who operate survivor support groups or social communities for survivors of brain injury, should have professional level training in some field related to brain injury.
14. The Term “Survivor”: We humbly acknowledge that many people with acquired brain injury whether from traumatic brain injury, stroke, brain tumor, or brain illness, self-identify with the term “survivor”. A survivor is someone who is able to carry on in spite of hardships, setbacks and trauma. It’s someone who is resilient and courageous enough to cope with and overcome adversity and misfortune. That is what we do. Many people in our brain injury survivor community are keen on using this term. Not every person who sustained a brain injury wishes to make use of this designation, but for those of us who want to we consider it a badge of honor to state that we are brain injury survivors.