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by Barbara Grande
It started with a phone call from JoAnne Robbins five years ago. Would I be interested in doing research in dysphagia with Parkinson's patients? The research was being conducted by ASHA's clinical trials affiliate, the Communication Sciences and Disorders Clinical Trials Research Group (CSDRG). This seemed to be just the opportunity I was waiting for.
At that point in my career, I had been in clinical work for at least 15 years. I thought of the countless patients moving through our department whose diagnoses, interventions, and outcomes were duly documented and filed away. I remembered with frustration and some guilt the many times I had heard, in seminars and lectures, that each patient was a potential research subject whose data should be collected to support a research question about clinical practice or outcomes. This data would provide the evidence-based practice information we should all be trying to accumulate.
It's not that I hadn't tried. But my efforts were largely unsuccessful for several reasons-my research designs seemed flawed; I couldn't accrue sufficient numbers of patients in diagnostic, gender, and age groups without depending on other colleagues or other sites; collecting the data was cumbersome; and analyzing the data was beyond my time and expertise (my statistics classes were completed many years ago).
Participation in the project would bypass these obstacles. The research design was appealing, with no conflicts in withholding treatment or dilemmas in making recommendations. My collected data would become part of a large national pool. Experts in data collection and analysis would provide support, determine randomization, and maintain accuracy to assure a high standard of research. I was ready to sign on!
My enthusiasm for the project was an important ingredient in convincing my administrators that it was a worthy effort for our organization. They were pleased we would be seeing more patients and contributing to improved interventions based on clinical trials-the gold standard in human subject research.
Training was the first step in becoming part of this project. New clinician investigators traveled to a central site to spend two days learning the protocol, analyzing video swallow studies, and collecting the materials we would need to run our future subjects. We learned a great deal about research, as well as the discipline, consistency, and integrity required to participate in research.
We made new friends, launching relationships that would grow over the next several years. We shared excitement, anxiety, and the sense of importance in what we were about to do.
Since that first telephone call five years ago, I have had the great satisfaction of accruing many subjects to this national clinical trial. It has been an enriching experience. Learning came in many forms. I learned from my subjects/patients. It was a great challenge to "switch hats" from researcher to clinician, keeping in mind that the subject being examined is also the patient who deserves the same appropriate clinical care as any other patient would receive.
Continuing education units have been provided on an ongoing basis through participation in conference calls scheduled to discuss our experiences, ideas, and concerns about the research and for important presentations on a variety of timely subjects. Last year, many of us gathered in Madison, WI as privileged participants in a face-to-face meeting to learn more about dysphagia and geriatrics from an esteemed multi-disciplinary cohort of experts. Some of us even had the opportunity to present case studies.
There was still plenty of time to gather informally and enjoy the camaraderie of shared experiences and satisfaction in what we had accomplished. The opportunity to know these other participating investigators, as well as the skilled members of the Central Lab who analyze the videofluorographic (VFG) examinations we conduct in the field, may be one of the greatest benefits of all.
Since this first clinical trial, I have committed to a second one. I am eager to continue utilizing my improved skills in measurement, consistency of performance, and finely honed scrutiny of swallow studies. I feel a sense of responsibility to participate in this way.
ASHA's CSDRG continues to explore new research opportunities, and as these become available for clinician participation we owe it to ourselves to consider giving back to the profession in this way. It is a way for us to have an impact, not only on the people we currently serve, but on those patients of the future whose faces we may never see, but whose lives can be forever improved by our efforts today.
Contributing to the development of our profession's evidence base is challenging and rewarding, and it is our unique role to fulfill as speech-language pathologists.
Barbara Grande is the dysphagia rehabilitation specialist for Covenant Rehabilitation Services. She participates in two national clinical trials studying efficacy of swallowing treatment, and was an initial contributor of data to the Shaker Exercise Protocol. Grande also served on the Division 13 Subcommittee for Specialty Recognition in Dysphagia. Contact her at bgrande@covhealth.org.
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