In Introducing the Axon Registry, Sigsbee et al outline the rationale, structure, function, and challenges related to the AAN’s development of its own clinical quality data registry: the Axon Registry. Dr. Lyell K. Jones, co-author, answers some questions we had after reading the report.
Q1) The article mentions that registries guide improvements at the population level. What are the best examples of quality metric registries leading to meaningful improvements?
While we have a great deal of experience with registries in medicine, clinical quality data registries are relatively new. Several other specialty societies have led the way in the developing registries similar to the Axon Registry, and have learned a great deal about the quality of care delivered to their respective patients. One example is the American College of Cardiology’s PINNACLE registry, which has yielded numerous insights into measure performance, clinical outcomes, and disparities in cardiovascular care. Many readers of Neurology may be familiar with the American Heart Association’s Get With the Guidelines registry, which has provided cerebrovascular neurologists with extremely valuable data regarding stroke outcomes and real-world effectiveness of cerebrovascular interventions. Below the system and population level, individual practices that participate in registries like Axon have an unprecedented window in their processes and outcomes of care, and can use their own data to improve quality of care.
Q2) Is it a problem that the entities creating the quality registries are also the ones the most vested in demonstrating value?
The foremost goal of the Axon Registry is to provide a tool for neurologists to examine and then improve the quality of care they provide to patients with neurologic disease. A prerequisite for this goal is that the data housed in the registry are accurate and valid. The AAN has a robust data governance policy that safeguards the integrity of the data and ensures that access to the data for analysis is done responsibly, with full disclosure of potential conflicts. There certainly will be opportunities at the system and database level for independent health services researchers to use Axon data to examine elements of the value equation, and we encourage them to do so.
Q3) The article mentions that validation steps are performed to assure the accuracy of data capture. Can you share with us the reliability thresholds for concluding measure performance as accurate?
The Axon Registry validation strategy includes practice level validation, systematic reviews of measure logic, and validation at the database level. One of the primary 2017 goals for the Axon Registry will be completing our database level validation. Given the scope and complexity of that work, our plan is to work with an external vendor to complete the validation process. Many specific details such as reliability thresholds either haven’t been determined or are too preliminary to share broadly.
For more information, see Introducing the Axon Registry: An opportunity to improve quality of neurologic care,