The incidence of closed head injuries is estimated at 200 per 100,000 people annually in the United States—meaning for every 100,000 people in the population, 200 will be admitted to the hospital for a traumatic injury of the head (Narayan, 2006). This estimate, which is conservative at best, indicates that traumatic brain injuries remain a prevalent public health issue. For similarly burdensome conditions like cardiovascular disease, cancer, and pulmonary obstructive disease, extensive standards of care exist to guide the treatment and management of patients. Yet for brain injury survivors, such a well-rounded standard of care is nowhere to be found. How can this be?
Standards of care are derived from years of research and clinical trials which determine what drugs and therapies work best for certain health issues. For many conditions, a continuous flow of attention and resources leads to the development of more and more therapies. These novel therapies can then be compared to the existing standard of care. Over time, as this process continues, the standard of care for a condition improves—yielding better outcomes for both the patient and the institution that treats them.
To understand why this process hasn’t occurred for brain injuries, we must first ask whether this condition receives the aforementioned flow of attention and resources. The answer is a loud, resounding “NO!” Contemporary research investigating concussions, traumatic brain injuries, and the like focuses almost exclusively on professional contact sports. While we would all love to see our favorite football player make a full recovery, the brain injuries inflicted upon star athletes are not the same as that of average individuals—who suffer the vast majority of brain injuries. Unfortunately, different injuries require different treatments, meaning the therapies derived for NFL players are unlikely to work for the greater population. This is the first blockade in developing a standard of care for brain injuries.
When investigating a new drug or therapy which may be effective in treating human conditions, one of the first steps is to test the new treatment in animals. TBI research becomes complicated even at this early stage in the process for one critical reason: the extreme variability in brain injuries.
Unlike an allergic reaction or a blood disorder, for example, which will manifest similarly from patient to patient, the type, severity, and pathophysiology of brain injuries share no such consistency.
By this same token, it is equally challenging to standardize brain injuries in the animals which serve as models (Roozenbeek et al., 2012).
Even if a method for standardizing brain injuries in both humans and animals were to be developed, another challenge persists: equating animal brains to human brains. When new drugs or therapies are created, they are developed to act on a certain, biological mechanism within the test subject. Before being tested on humans, scientists must first show that a new therapy works in animals. If they succeed in doing so, the relevant, biological mechanism in the animal must also be present in humans. When it comes to brains, there is skepticism around the similarities of animal and human mechanisms. As a result, this skepticism is extended to brain injury therapies and their ability to act in humans as they did in animals. This phenomenon further impedes the development of new standards of care (Roozenbeek et al., 2012).
Despite the obstacles mentioned thus far, new brain injury therapies and drugs have surpassed animal models and been tested in humans. Unfortunately, this stage brings with it its own caveats—notably in analysis. One such challenge is determining the outcome of interest. Scientists who run clinical trials for a therapy are interested in whether the new treatment improves a patient’s condition. A clinical trial for cancer, as an example, might investigate whether a new chemotherapy eliminates a tumor. Here, the outcome is concrete and unmistakable—the tumor is either still there or it goes away. When it comes to brain injuries, this aspect of the study becomes less clear (Roozenbeek et al., 2012).
Did the patient’s brain injury improve at all? Is the patient back to where they were before their brain injury? Has the patient regained the capacity for daily living? Which of these metrics should be considered a success in the clinical trial? These are all questions a scientist must ask of their study. What’s more, defining and measuring terms like “improvement” or “capacity for daily living” is a task easier said than done (Roozenbeek et al., 2012).
If we revisit the example of the clinical trial for a new cancer chemotherapy, all the study participants have similar baseline characteristics. By this we mean that all the participants have a specific type of tumor on a specific part of their body. This allows the scientist to accurately compare the outcomes of individuals who receive the new chemotherapy to those who receive a placebo. With brain injuries, accurately characterizing and comparing two brain injuries is a menacing, and arguably impossible, task. As a result,
brain injury clinical trials are often compromised by an imbalance of participants—meaning the participants’ baseline characteristics are often different.
This occurrence makes it challenging to evaluate the results of a clinical trial and, often, leads to the demise of the study (Roozenbeek et al., 2012).
The points mentioned thus far make it seem nearly impossible to improve the standard of care for brain injuries; it’s true, it’s really difficult, but not impossible. This sublime challenge is where Power of Patients steps up to the plate with novel solutions to catalyze the clinical research process. At face value, the Power of Patients Dashboard is a customizable, easy-to-use, and powerful tool to help brain injury survivors track their symptoms and triggers. Behind the scenes however, the software’s algorithms and artificial intelligence are hard at work for clinical research scientists.
Every brain injury is unique, which can cause some of the arduous obstacles in clinical trials discussed above. Power of Patients accounts for this high level of diversity and taylors the interface to capture each user’s distinctive experience. This not only helps the user better understand their own condition, but also allows clinical researchers to group similar patients together for research purposes—effectively bypassing the aforementioned issues in the analysis stage of clinical trials.
If you’re ready to begin recovering from your brain injury, while simultaneously fueling new standards of care, it’s time to register for the Power of Patients Dashboard. What are you waiting for? Do so today, at www.powerofpatients.com