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AAN to Develop a Clinical Registry for Neurology

Lessons from Other Medical Society Registries

Avitzur, Orly, MD, MBA, FAAN

doi: 10.1097/01.NT.0000461311.00851.3e
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The AAN is launching a clinical registry for neurology. Several medical society representatives discuss the opportunities and challenges they've experienced in developing registries in their specialties.

When I ask neurologists what contributes most to their dissatisfaction and ultimate burnout after years in practice, they frequently cite these culprits: the onerous requirements associated with reporting on quality measures, electronic health records (EHRs), and maintenance of certification (MOC).

Most aggravating, they say, is the fact that many of the existing quality measures for programs such as the Physician Quality Reporting System (PQRS) and meaningful use of EHRs do not relate to our patient care.

“Most Centers for Medicare and Medicaid Services (CMS) quality programs don't have neurology measures,” said Eric M. Cheng, MD, FAAN, an associate professor in the department of neurology at the David Geffen School of Medicine at the University of California, Los Angeles, and a member of the AAN Practice Management and Technology Subcommittee.

This is why Dr. Cheng welcomes the creation of a clinical registry on the care of neurology patients. Approved this past fall by the AAN board of directors, the registry will hopefully address these reporting challenges, he said, and build an evidence base for developing quality indicators that would be adopted by payers.

“The AAN truly recognizes that most neurologists are already at their limit when it comes to charting requirements,” said Sarah M. Benish, MD, a general neurologist at the Minneapolis Clinic of Neurology and a member of the newly formed Registry Committee.

“We are looking to launch a product that allows for meaningful data collection and that can have a quick and direct impact for the member — who has to meet MOC requirements and qualify for PQRS (or whatever alphabet soup requirements CMS will have in place at the time) — without adding to neurologists' charting burden,” Dr. Benish said. “It will also assist the AAN to have a stronger voice in the development of measures and help neurologists to learn best care practices for their patients.”

The AAN registry will extract data from a variety of EHRs to evaluate specified outcomes for a population. The Registry Committee has not yet selected the specific measures to be included, but it could potentially include both process and outcomes measures. A process measure, for example, might include whether annual screening for depression occurred. The outcome measure could be improvements to patient health questionnaire (PHQ-9) scores over time.

Feedback on a personal level will be collected in real time, Dr. Benish noted, and will facilitate comparison with other neurologists. The Academy hopes to launch its pilot cohort in the fourth quarter of 2015; the goal is to reach 2,000 participating members by 2017.

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Representatives of three medical societies that have launched their own specialty-specific registries discussed with Neurology Today both the opportunities and challenges of these initiatives.

As chair of the Society of Thoracic Surgeons (STS) Workforce on National Databases and its Quality Measurement Task Force, David M. Shahian, MD, has led the development of numerous risk models and performance measures in cardiac surgery. The STS registry was developed in 1989 after the publication of mortality results by the Health Care Financing Administration.

“These flawed reports did not adjust for how sick patients were before surgery, so hospitals caring for more critically ill patients appeared to have worse results,” Dr. Shahian said. “In response, STS and its statistical consultants developed a clinical data registry and used these data to implement risk adjustment, so that hospitals caring for sicker patients would not be unfairly penalized. For example, if a patient had experienced a serious heart attack just prior to surgery and required an emergency operation, these factors and the resulting increased probability of a bad outcome were now taken into consideration.”

The Adult Cardiac Surgery Database has grown to contain more than 4.5 million surgical records, representing an estimated 90-95 percent of all adult cardiac surgery centers across the US and over 3,000 participating surgeons. This near-universal participation of cardiac surgery programs in the STS Database has allowed the STS to present a compelling case when they have discussions with CMS and other payers, said Dr. Shahian, who is a professor of surgery at Harvard Medical School and vice president of the Massachusetts General Hospital Center for Quality and Safety.

William L. Rich III, MD, medical director of health policy for the American Academy of Ophthalmology (AAO), said the AAO launched its registry, IRIS, last April. Their initial goal was to include 2,200 ophthalmologists with 18 million patients by 2017, but member interest was so keen that the AAO quickly exceeded those projected targets. The latest estimates anticipate that double that number — 4,400 physicians with 38 million patients — will have been contracted by 2017.

Dr. Rich noted that one of the greatest benefits of developing the AAO registry has been the ability to develop 22 process and outcomes measures in six months; it had previously taken them years for nine other measures to go through the National Quality Forum.

The IRIS qualified clinical data registry is able to collect information that enables practices to report meaningful use clinical quality measures, PQRS, and the value-based payment modifier program by automating the extraction of EHR data as well as the data needed to report for MOC.

“Our physicians are able to receive quality feedback on their computer dashboards with decision support to help them reduce regional variations in care,” explained Dr. Rich, who is president of North Virginia Ophthalmology Associates. “This rapid feedback changes behavior quickly, unlike government programs that typically provide yearly feedback that is not actionable,” he said.

The registry helps improve care by enabling physicians to monitor patient interactions, track interventions, measure targeted quality outcomes, and identify and address gaps in quality of care; they can then compare their clinical data against the performance and outcomes data of other physicians. Moreover, unlike facility-based registries, it can follow patients longitudinally to enable comparative effectiveness research, surveillance, and a practice-based research network.

Frederick Masoudi, MD, MSPH, a professor of medicine at the University of Colorado Anschutz Medical Campus, has served as senior medical officer for the National Cardiovascular Data Registries (NCDR®) since 2008. One of the most established professional society registry programs, the NCDR was founded in 1997 by the American College of Cardiology (ACC) in order to measure and improve the quality of cardiovascular care with detailed clinical data. The NCDR has grown over time to include five hospital-based programs, two multispecialty registries, and one outpatient registry, PINNACLE Registry®, launched in 2009 and serving as the nation's largest cardiovascular ambulatory quality improvement registry.



Dr. Masoudi believes that its greatest benefits to ACC members include the ability to measure and improve quality, facilitate reporting for PQRS, as well as offer a mechanism to provide MOC credits. In addition, it helps ACC members meet American Board of Internal Medicine requirements of performance in practice, partner with payers to allow them to receive recognition of quality status, and provides the infrastructure for conducting research for publication.

The registry also allows their members to engage in a range of clinical trials, observational studies, and investigator development programs through its Registry Research Alliance. It enables practices to track progress over time and identify areas for improvement, such as hypertension management and stroke prevention in patients with atrial fibrillation. Its data, for example, revealed that only 57.2 percent of non-valvular atrial fibrillation patients at high risk for stroke were prescribed guideline-recommended anticoagulation therapy.

The registry's success can be measured in numbers. In March 2014, the PINNACLE Registry completed a record number of submissions to CMS for the 2013 PQRS program, successfully reporting up to 23 PQRS measures on behalf of 1,236 providers across 96 practices. Beginning in 2014, the registry also served as a specialized registry for stage 2 of the EHR meaningful use program, allowing its participants to meet one of the required menu set of options for incentive eligibility.

The registry has not been without growing pains, however. “One of the greatest challenges has been to collect data from highly disparate sources,” said Dr. Masoudi. The solution has been to use software that interfaces with disparate EHR systems to extract specific data points from each medical record.



Dr. Masoudi said they also found that the timing of the feedback influences the user experience. For the registry to deliver timely and personal information, it's necessary to reach a critical mass of patient encounters; the closer to real time, the better poised they are to make a difference in patient outcomes, he explained.

The expense and manpower required to run seven programs is also daunting, he noted. Staff are required to maintain information technology, handle various data sources, integrate changes in guidelines and performance measures, and more.

“Every physician and every practice will be evaluated under the new health care paradigm,” said Dr. Shahian. “All health care providers should be involved in a clinical registry that has developed robust, scientifically valid performance metrics.

“By analyzing your own data against national benchmarks, areas of opportunity for improvement will become evident and quality will improve,” he advised. For example, recent studies show that outcomes for coronary artery bypass grafting surgery have improved dramatically, with a relative 24.4 percent reduction in the risk of death, a 26.4 percent relative reduction in the risk of stroke, and a 32.9 percent relative reduction in the risk of major chest incision infection.

The ultimate hurdle in establishing a registry may lie in physician resistance, Dr. Masoudi cautioned. “Not everyone understands that we are living in an era of accountability in medicine,” he said. “You can take professional responsibility for such accountability or you can bury your head in the sand. If you do nothing, you can count on the fact that it will nevertheless be done by someone else; you will be measured and you will be judged for it.”

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Many neurologists have simply opted out of various Centers for Medicare and Medicaid Services (CMS) quality mandates and decided to accept the penalties imposed on those who do not participate.

According to CMS, only 41.3 percent of eligible neurologists participated in PQRS in 2012 (2013 reporting data are not yet available). Unfortunately, few neurologists will soon be able to afford incurring those penalties, which, unless the rules change, are estimated to reach an aggregate of 9 percent.

By 2017, physicians in groups of at least 10 providers will experience a 3 percent cut in Medicare pay for failing to participate in the EHR program, a 2 percent cut for failing to participate in the PQRS program, and a 4 percent cut for failing to participate in the value-based modifier initiative in 2015. [See the Dec. 4 Neurology Today article, “Value-Based Payment Comes to Neurology: How to Prepare and What You Can Do Now,” at:]

In order to evaluate the financial impact to your practice, test out this calculator available on the AAN Practice Management Resources page:

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•. AAN resources on quality/performance measures:
    © 2015 American Academy of Neurology