CCID Expands Research Focus for Helping People with Chronic Illness and Disability
Dr. Lynn Gerber
"We need more than a better wheelchair," Dr. Gerber asserts in her office in George Mason University's Center for the Study of Chronic Illness and Disability (CCID).
Her close colleague and collaborator, Dr. Weinstein, nods with agreement. "The medical community needs a more comprehensive, strategic approach—one that includes the wheelchair, yes, but also promotes participation in a host of chosen roles and activities desirable to each person. Examples of this might include efforts to understand why people with disabilities cannot (or do not) return to work, school, and play. How do we increase their agency in pursuing desired activities and returning to prior life roles through both pharmacological and non-pharmacological interventions? Here at the CCID, we're focusing not just on disease, but on a variety of factors that can affect the outcome of patients faced with chronic illness and disability."
First launched in 2006, the CCID is one of Mason's newer initiatives. "We're not an institute or a University Center," Dr. Weinstein shares, "we're a college center." Currently, the Center engages about 20 students in a variety of research endeavors who are involved in both undergraduate and graduate research, coming from College of Health and Human Services, the College of Science, the College of Humanities and Social Sciences, the Volgenau School of Engineering—and more. "We're truly one of the few intercollegiate research centers on campus," Dr. Gerber asserts confidently. "We're quite unique not only in how we encourage collaboration, but in our approach to looking at the whole person." Their own partnership reflects that fusion: Dr. Gerber's background is in internal medicine and physical medicine and rehabilitation, Dr. Weinstein's background is in psychology, with a special interest in the dynamic relationship between exercise and mood. They're assisted by their Mason affiliates--Dr. Zoran Duric in computer science, Dr. Guoqing Diao in statistics, Dr. Siddhartha Sikdar in biomedical engineering, and Dr. Hyung Park at the National Institutes of Health.
It was that diverse, but concerted approach that earned CCID the interest of the American Institutes for Research. Together, the two applied for a grant from the National Institute of Disability and Rehabilitation Research (NIDRR), who gave them five years of funding to develop the Model Systems Knowledge Translation Center. The CCID and the NIDRR are now working to achieve their goal of transferring knowledge from research and patient care, learned from a federally supported network, to improve outcomes for people with Spinal Cord Injury, Traumatic Brain Injury and Burns.
Dr. Gerber leans forward. "We're working to translate the results of clinical experience and research for these complex, chronic problems. To do that, sharing knowledge is incredibly important."
Dr. Ali Weinstein
Knowledge translation is a term used a lot in the Center as they work to disseminate knowledge across four distinct groups, or "stakeholders"—patients, caregivers, professionals, and policy makers. Dr. Gerber and Dr. Weinstein explain that the Department of Education grant is all about knowledge sharing. "We want to increase crosstalk and data sharing. You'd be amazed at how much knowledge has already been gathered, but isn't fully utilized. In this grant, our primary goal is an educational one; not to pioneer new research, per se, as much as to advance new ways of effectively sharing knowledge across these four groups, using new technological tools, communication methods--whatever it takes. For example, there was a recent trial looking at an exciting new drug for traumatic brain injuries, amantadine—we want to see that information get out to each stakeholder group and be as effective as possible."
That's not to say the CCID won't be conducting research. But first, they will need to determine how to obtain a representative sampling of the issues challenging people faced with chronic illness and disability, how to collect these data and analyze them, and how to present new information to interested parties.
Again, the first step is to conduct their systematic review of existing literature for spinal cord injuries, traumatic brain injuries, and burn cases. "We're trying to expand the ability to extract information from studies that are not quantitative and translate that for our different stakeholders. Then, we can build on that knowledge to help inform future research." Over the next year, the CCID will be using national databases during their systematic review, figuring out what research to look at now and which patient groups to ask further questions of in the future.
As they press forward, how do they continue to figure out what patients require, beyond a better wheelchair? Along with knowledge translation, the Center is preeminently concerned with evaluating consumer needs. There are three basic criteria they work with in that regards.
"The first is patient need versus want." Dr. Weinstein interlocks her fingers. "For example, a spinal cord patient facing all kinds of day-to-day mobility needs may not indicate right away that altered sexual function is a huge concern—but it may be a substantial want affecting their quality of life and one we should be concerned about."
"The second is accessibility to information, to begin with. How are patients finding out more about their medical problems and their various treatment options? Is it via a PowerPoint presentation hosted on a website? A newspaper article? A Twitter feed? One of our collaborators is WETA, our local public broadcasting station. Their Brainline.org website is an excellent example of current research information translated to an accessible and understandable website."
"The third is how do they implement the knowledge that they do have. Patients are inundated with information—how effectively is it integrated into their daily lives? Is it truly empowering them, or does it get lost in translation?"
Dr. Gerber smiles. "Enabling the patient group is what motivates us, here at the CCID." Dr. Weinstein agrees. "At the end of the day, empowering them is what fuels everything that we do."
Written by Josh Ambrose