Axon Registry—Good for your Patients, Practice, and Profession

What if you could access a tool that would simultaneously benefit your patients, your medical practice and the overall profession of neurological health care? A tool that relieved you of the burden of daily reporting to meet requirements for Medicare and other payers, while also providing the data you need to improve quality and patient outcomes? And what if you could do this at no cost to yourself or your patients? The smart money says you’d do what 1,000 neurologists in 70 practices have already done: You’d sign up to be part of the AAN Axon Registry®, a clinical quality data registry that accumulates and tracks information related to the treatment of ambulatory neurology patients.

As of February 2017, there were over 2 million neurology care visits for 821,000 patients in Axon Registry. With increased quality reporting requirements, there has been a jump in the number of small or solo practices participating in the registry. In 2017, the registry will focus efforts on external data validation. The purpose is to ensure the data captured are accurate and represent what is in the medical record. “If providers use these data to qualify for payment in Center for Medicare and Medicaid Services (CMS) programs and the AAN intends to conduct health services research with the data, we must be confident in its accuracy and validity,” said Lyell Jones, MD, FAAN, Chair of the AAN Registry Committee.


Here’s how the registry has been operating in the pilot phase that began in the spring of 2015. First, the participating practice registers with the AAN and completes a brief contracting process giving permission to collect and access the patient data. (It’s important to note that the data collected is aggregate, with no way to identify individual patients). The next step is for the practice to work with the AAN’s technology vendor to set up the system that will collect patient data each day from the practice’s computer system. This setup process takes three to four hours spread out over a series of phone calls, Bruce Sigsbee, MD, FAAN, past president of the AAN and founding Chair of the Axon Registry Committee, says.

And that’s about all there is to it. In most cases, the data from each day’s patient visits will be automatically collected by the registry’s software; in a few cases, where the practice’s electronic health records system does not integrate well, the information needs to be uploaded to the registry each day by someone at the practice. So far, according to Becky Schierman, MPH, the Academy’s vendor has worked with more than 75 EHR systems, and the vast majority have been compatible with the automatic processes for data collection.

Schierman, who is the AAN’s Director of Quality Improvement, says that it’s been easier than she expected to sign up practices for the trials, with 13 even standing by on a waiting list. “I think that people see this as a good solution for meeting reporting requirements,” she says. “Some are using it to see gaps in care, and to see where other practices are doing things that they aren’t. For the research centers, I think it’s appealing to have the data. We have a good cross-section of practice types and they all have their own reasons for participating.”


Here are some of the ways the Axon Registry can or already is improving things in the world of neurology.
Physicians and their practices are perhaps the primary beneficiaries of the registry, for two main reasons: Timely, accurate reporting and quality improvement. As every physician knows, reporting requirements have been increasing almost exponentially and the penalty for not meeting the requirements is high. In some cases, poor reporting will result in lower payments for care provided to patients; in other cases, inadequate reporting endangers the practice’s board certification. Participating in the Axon Registry provides an elegant, nearly painless solution by completing the reporting automatically. The physician still needs to diagnose and document correctly, but the burden of parsing the information into multiple reporting systems is handled by the registry.

Quality benchmarks constitute Axon’s other notable benefit for practitioners. By selecting from the current list of 22 measures in the system, the practice can see real-time data on its dashboard to identify gaps in care and benchmark against the data provided by other practices. Sigsbee, who is part of a three-doctor group at a hospital in Maine, says he has already seen the benefit of Axon’s quality improvement aspect. “I became a real fan of this process when my own hospital became certified as a stroke center,” he says. “We knew what patients should have but we found they weren’t always getting it. For example, we found gaps in the EMT system, and in areas of what we should have done for patients. We’re now correcting those gaps and improving our measures.”

Sigsbee is quick to note that Axon isn’t a comprehensive quality improvement program. Even so, he says, “Without the measurements, you just don’t know that you’re not meeting the standards. It’s a problem identification system.” Schierman agrees. “Everyone thinks they’re delivering high quality care,” she notes, “but you can’t know that for sure without the data.”

The profession of neurology is another clear winner when a clinical quality data registry is put into widespread use. The data collected not only creates a reservoir of information to be mined by future researchers, it also provides critical guidance for legislation impacting the practice and profession of neurology. Sigsbee feels strongly that data is a key for safeguarding the role of neurology in health care policy decisions. “It’s important that neurologists are there in the health care delivery system, that we have the data collected to prove that neurologists do improve the quality of life. That’s what’s needed for CMS, legislators, and any others who are making decisions for resource allocation.”

Schierman believes there may be one more benefit to the profession from using the Axon Registry: Lowered physician burnout. While it would be difficult to measure this outcome, Schierman notes that, anecdotally at least, there’s a correlation between burnout and the increasing complexity and level of documentation required of physicians. Sigsbee adds to that hypothesis by noting that the increasing shortage of neurologists is likely connected in part to physician burnout, as neurology is known to be one of the specialties most prone to this malady. Both Sigsbee and Schierman point to the registry as a way to decrease the burden of documentation that currently falls on practitioners. “This helps,” Sigsbee says, “because it’s all happening in the background. The physician doesn’t have to figure out a way to report through spreadsheets, extract the data, etc. It’s taking a laborious, multi-step process and reducing it.”

Of course, patients are not incidental to the discussion of the benefits arising from using the Axon Registry. Anything that helps doctors improve the quality of care will have a direct impact on patients. More specifically, the data collected by the registry lets practitioners see a wider range of care protocols while they benchmark themselves against other physicians. The patient wins when neurologists and the profession of neurology win.


Both Sigsbee and Schierman believe that the future for Axon and similar registries is bright. In addition to cardiology and ophthalmology—two disciplines that initiated registries before the Academy— numerous other societies are beginning the process of developing their own clinical quality databases. The result, Schierman says, could easily be “a type of medical data super warehouse” allowing practitioners and researchers access to enormous amounts of information.

As for Axon, Sigsbee says he is looking forward to the implementation of more quality measures that cover a broader range of specialties within neurology. While the Academy took care to ensure the first 22 measures would be relevant to the broadest number of practices, he says “We have about 28 identified subspecialties in neurology. Our ultimate goal is to have a meaningful battery of measures for every subspecialty in neurology.”

For the near-term, the goal for Axon is to complete the data validation stage of the pilot in time to open the registry to the broader AAN membership in the spring of 2017, still at no cost to members. According to Schierman, “Right now there are no plans to charge for participation in Axon; we think it’s important enough to make it a member benefit. It’s worth the work and money we’re investing because it’s important for the future of the profession.”