Clinical registry programs have become valuable tools to support evidence development, performance assessment, comparative effectiveness studies and adoption of new treatments into routine clinical practice. They provide useful information to healthcare professionals to improve the safety and quality of patient care. The NeuroPoint Alliance (NPA) focuses its clinical registry efforts on promoting the quality of patient care and providing physicians with the means to assess risk-adjusted measures of the value and efficacy of treatment responses. In collaboration with over 20 surgical and anesthesia specialty societies in the Surgical Quality Alliance (SQA), the NPA works to define the principles of surgical quality measures, develop meaningful tools for quality improvement and provide a forum for shared and coordinated efforts among the specialties in order to monitor and respond to federal and private sector initiatives.
The NPA’s quality-focused registries continue to support improved quality of care through the aggregate experience of other patients represented in the registry, primarily by assisting in the understanding of patient perspectives on clinical outcomes and by providing the ability to compare the relative effectiveness of various therapeutic interventions for the same disease or condition. The registries are novel information systems that help to define, predict, influence and measure the economic and clinical effectiveness of care. Quality remains poorly described, and valid methods to continuously measure, promote and report safety and quality in health care are underdeveloped. Administrative databases are ill suited to address comprehensive value challenges. In this environment, the NPA’s clinical data registries have emerged as useful and logical mechanisms for providing stakeholders with high-quality data related to the safety, effectiveness and value of specific interventions and to measure clinical outcomes of relevance to all healthcare stakeholders.
Spinal disorders are the second most common reason for adult visits to a medical provider and lower back pain is the most common cause of work-related disability in the U.S. The direct costs for spine care in the U.S. exceed $90 billion annually and total costs, which include patient workday losses and caregiver costs, may exceed $200 billion. Estimates are that 10-25 percent of spine care diagnostic and therapeutic maneuvers are unnecessary and ineffective. According to the Agency for Healthcare Research and Quality (AHRQ), spinal fusion is the most costly operation performed in U.S. hospitals. This presents the opportunity to use registry data to improve quality by identifying major outcome drivers to improve care.
“In an era of alternative payment models and quality reporting, having reliable data on your patient outcomes and how you compare to others around the country becomes ever more important”, says Chair of the NPA Board of Directors Robert E. Harbaugh, MD, FAANS. “Whatever we measure usually improves. By tracking our patient outcomes, we have been able to refine our operative indications, document the effectiveness of neurosurgical care in the great majority of patients and hold ourselves accountable for less than ideal outcomes.”
William J. Benedict, Jr., MD, FAANS, surgeon champion for QOD at WellStar Health System in Marietta, Ga., agrees. “There is a lot of variability in spine care and outcomes. QOD gives us the opportunity to apply benchmarks and solid patient-focused outcomes data. We are interested in the right patient, the right operation, and the right outcomes. For us, it is all about the patients and NPA is giving us the platform to demonstrate our ability to provide them with consistent care.”
The NPA’s registry programs yield data with strong external validity. Registries typically have broad inclusion criteria and collect data in a comprehensive manner. Therefore, results can be generalized to broad populations. For example, through a generous grant from the Neurosurgery Research and Education Foundation (NREF), the NPA engaged with the Institute for Healthcare Improvement (IHI) as a methodology partner for a nine-month focused quality project to determine the major outcomes drivers for length of stay and readmission. The project used outcomes drivers identified in QOD predictive models to improve care. This was the first prospective registry project designed to decrease readmission rates after elective spine surgery in major centers.
The NPA has shared learnings from its various registries through numerous publications and targeted educational sessions. Led by Dr. Harbaugh and Anthony Asher, MD, FAANS, a full day registry course will be offered on Sunday, April 14, 2019, in conjunction with the AANS 2019 Annual Scientific Meeting in San Diego. Dr. Harbaugh added, “The many projects we have initiated in spine surgery, cerebrovascular and endovascular neurosurgery, stereotactic radiosurgery, functional neurosurgery and soon in tumor surgery and pediatric neurosurgery will continue to pay dividends for many years into the future. I believe that the kind of data services we offer can have a significant impact on neurosurgical patient care, research and education.”
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