Center Focuses on Helping the Chronically Ill and Those with Disabilities
By Josh Ambrose
“We need more than a better wheelchair,” says Naomi Lynn Gerber, University Professor of Rehabilitation Science and the director of the Center for Study of Chronic Illness and Disability (CCID).
“The medical community needs a more comprehensive, strategic approach [to treating people with chronic illnesses or disabilities]–one that includes the wheelchair, yes, but also promotes participation in a host of chosen roles and activities desirable to each person,” Gerber says.
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 nonpharmacological interventions?” Gerber asks. “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.”
Gerber has spent much of her career working on this type of research. Prior to coming to Mason, Gerber served as chief of the Rehabilitation Medicine Department in the Clinical Center of the National Institutes of Health from 1975 to 2005. While there, she led the development of a state-of-the-art, program-driven research section to study human movement in collaboration with the National Institutes of Child Health and Human Development.
She launched the center at Mason in 2006.
“We’re not an institute or a university center,” says Ali Weinstein, deputy director of the center. “We’re a college center.”
Currently, the center engages about 20 undergraduate and graduate students in a variety of research endeavors. The students are coming from the College of Health and Human Services, the College of Science, the College of Humanities and Social Sciences, and the Volgenau School of Engineering.
“We’re quite unique not only in how we encourage collaboration, but in our approach to looking at the whole person,” says Gerber.
Their own partnership reflects that fusion: Gerber has a medical degree and a background in internal medicine and physical medicine and rehabilitation, and 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–Zoran Duric in Computer Science, Guoqing Diao in Statistics, Siddhartha Sikdar in Bioengineering, and Hyung Park at the National Institutes of Health.
It was that diverse, but concerted, approach that earned the center the interest of the American Institutes for Research. Together, Weinstein and Gerber applied for a grant from the National Institute of Disability and Rehabilitation Research (NIDRR), which 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.
“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,” Gerber adds.
Knowledge translation is a term used a lot in the center as they work to disseminate knowledge across four distinct groups of stakeholders—patients, caregivers, professionals, and policy makers. Gerber and Weinstein explain that the 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,” says Gerber. “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. ”
That’s not to say the center 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.
“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,” says Gerber.
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 concerned with evaluating consumer needs. There are three basic criteria they work with in that regards.
“The first is patient need versus want,” says Weinstein. “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. 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?
“One of our collaborators is WETA, our local public broadcasting station,” Weinstein continues. “Their Brainline.org website is an excellent example of current research information translated to an accessible and understandable website.”
The third is how patients 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?
“Enabling the patient group is what motivates us here at the CCID,” says Gerber.
Weinstein agrees. “At the end of the day, empowering them is what fuels everything that we do.”
This story originally appeared on the College of Health and Human Services website.
To read more stories about Mason, check out the university’s News site.