Published: June 24, 2015

Registry 101

Patient registries are organized systems for patient data collection. Often developed and maintained by specialty societies, they can serve a number of purposes, with data collected for scientific, policy, or clinical reasons.

What is a registry, what types are there, and what are they used for?

registry2Patient registries are organized systems for patient data collection. Often developed and maintained by specialty societies, they can serve a number of purposes, with data collected for scientific, policy, or clinical reasons. The value of mature clinical data registries has been proved by multiple peer groups, including the Society for Thoracic Surgeons (STS) and the American College of Cardiology (ACC), both of whom have maintained registries since the 1980s. As the value of registries has become more obvious, more and more specialty societies are in various stages of planning and developing registries of their own.

Patients included in a registry typically have a similar disease condition or have undergone the same type of procedure. The type of registry developed depends on the ultimate purpose, with different infrastructure and support dependent on registry type. For example, Quality Improvement (QI) registries differ from those designed primarily for research purposes, or those for post-market surveillance.

The most important step in building a registry is identifying its purpose such that it aligns with member needs and expectations. The Registry Task Force (RTF), chaired by Lisa E. Ishii, MD, MHS, and including the Performance Measures Task Force Chair, Richard M. Rosenfeld, MD, MPH, as well as James C. Denneny III, MD, David L. Witsell, MD, MHS, Robert R. Lorenz, MD MBA, Jennifer J. Shin, MD, SM, Rodney P. Lusk, MD, and David R. Nielsen, MD, is charting the course forward for the AAO-HNSF. In collaboration with the consultant Avalere Health and Academy staff, the RTF will identify the core purpose and scope of the Registry.

Reg101-chartHow are registries used?

Being aware of the different ways in which registries are used is important.


  • To generate evidence; evaluate the method or outcomes of treatment provided
  • To conduct comparative effectiveness research (CER)
  • To identify practice trends

Quality improvement

  • To analyze the data provided to improve individual or group provider performance
  • To report measurement data for national quality programs
  • To develop quality measures
  • To assess gaps in patient care or provider performance
  • To report quality data for pay for reporting/pay-for-performance initiatives


  • To make coverage decisions
  • To determine reimbursement rates

Surveillance/public health

  • To monitor public health development and post-market surveillance
  • To understand and address burden of disease

Who uses registry data?

Different healthcare stakeholders use registry data for a variety of purposes.

Providers use registries to:

  • inform treatment decisions
  • report quality measures and participate in Value-Based Payment (VBP) programs
  • improve quality of care via enhanced surveillance and population management

Payers use registries to:

  • understand patient markets
  • inform coverage determinations and benefit design decisions
  • track prevalance trends

Registries provide patient benefits by helping:

  • provide clinical knowledge for complex diseases
  • identify optimal interventions or population-specific care
  • assess therapy outcomes and side effects

Industry uses registries to:

  • demonstrate the value of its products
  • conduct post-market surveillance
  • generate Comparative Effectiveness Research (CER)

One of the major types of registries now emerging with the advent of quality reporting for Medicare quality programs is a QCDR or Qualified Clinical Data Registry. These registries are used to report to the Physician Quality Reporting System, or PQRS, and are built to help members report on approved measures for CMS quality reporting. Over time these registries may grow and add new performance measures, but their core deliverable is quality reporting. A good number of societies have developed their QCDRs jointly with their boards as collaborators and partners so that physicians may one-stop shop for quality reporting, Maintenance of Certification Part IV points, and quality improvement. QCDRs house performance measures approved by CMS for PQRS reporting. Until 2019 and for a good period of time thereafter, QCDRs will have a role to play both for PQRS until it is phased out and then in the new CMS Merit Based Incentive Payment Systems (MIPS) as it launches. However, the environment bears watching as physicians who join alternative payment programs will be exempt from quality reporting in 2019.

Walking hand-in hand with QCDRs are PQRS-approved performance measures as they are necessary for quality reporting inside a QCDR. Measures are also important to other types of registries as well as the new payment models.

Here, inside the AAO-HNSF, staff is working closely with the RTF to identify the purpose of the AAO-HNSF registry. At the same time, staff is also working closely with the Performance Measures Task Force to assure the creation of measures for submission to CMS for PQRS, use in the AAO-HNSF registry, and use in alternative payment models.

Right now the AAO-HNSF is in the planning phase of registry development, or Phase 1.

The AAO-HNS/F Boards approved funding for the registry in March. The RTF is currently working through Phase 1 activities to plan for the best registry solution for our specialty and to have a registry vendor chosen by the end of September 2015.

As we continue to work through these steps in the planning phase, we will continue to keep you informed through the Bulletin, the News, and other targeted communications throughout the process.



More from July 2015 - Vol. 34 No. 06

Working together on performance measures
Measurement aligns with registry, payment models Quality metrics and performance measures have assumed center stage as payment progresses forward to alignment with quality of care and efficiency in care. To address Member needs for clinical quality measures, the AAO-HNSF launched the Performance Measures Task Force (PMTF) comprised of Richard M. Rosenfeld, MD, MPH, Chair, and Lisa E. Ishii, MD, MHS, James C. Denneny, MD, Richard V. Smith, MD, Jane T. Dillon, MD, MBA, Julie L. Goldman, MD, and David R. Nielsen, MD, in 2014. The Task Force held its first meeting in February 2015. Specific outcomes included a commitment to develop two prioritized sets of measures based on clinical practice guidelines (CPG), a continued collaboration with the AMA-convened Physician Consortium for Performance Improvement® (AMA-PCPI®) for measures testing, and exploration of tools that will facilitate faster development of measures from CPGs. Over the past year, the Foundation has produced a measures development strategy aligned with its registry initiative and new payment models to meet critical Member needs in the realm of quality reporting and support of Medicare and commercial reimbursement with an overarching goal of reinforcing the value of care provided by Members. The AAO-HNSF is moving forward for Members on three fronts in the realm of clinical quality measures. First, the Foundation took over ownership and stewardship of the AMA-PCPI® measures most applicable to our Members, which include acute otitis externa (AOE), adult sinusitis, and otitis media with effusion (OME) in December 2014. Each of the measures had time-limited endorsement from the government contractor for measure endorsement, the National Quality Forum (NQF). One of the key roles of measure owners and stewards is ensuring the continued validity and endorsement, as well as dissemination and use of the clinical quality measures in its portfolio. To this end, the acute otitis externa (AOE) and otitis media with effusion (OME) measure groups are under consideration in NQF for continued endorsement under their Head, Eyes, Ears, Nose, and Throat (HEENT) measures initiative. This particular NQF project seeks to identify and endorse clinical quality measures for accountability and quality improvement that address these structures. The NQF Committee overseeing this project has two Academy Member appointees, Kathleen Yaremchuk, MD, MSA, and Michael G. Stewart, MD, MPH. Dr. Rosenfeld will provide his expertise in responding to any questions from the panel during the AOE and OME measures review. Much work has been done behind the scenes to prepare the measures applications, identify all uses of the measures since their initial endorsement, gather all research on gaps in care these address, and all testing and reporting data for submission to NQF for review. During May and June conference calls were held with the NQF HEENT Committee overseeing this initiative. The process concluded with a formal presentation of the measures by the AAO-HNSF to NQF in June. As the AOE and OME measures were prepared for NQF endorsement, the Foundation launched its own review of the adult sinusitis measures. This review of the measure specifications highlighted several issues that may have impacted Members’ quality reporting in 2014. Staff worked closely with the Centers for Medicare & Medicaid Services (CMS) executive leadership and with the Physician Quality Reporting System (PQRS) vendors to assure correct reporting for Academy Members in 2014 and 2015. Complete revisions to these measures will be in place for 2016 reporting as well. These measures are now under Academy ownership and stewardship, which will allow for continued utilization in the PQRS program and for broad dissemination to assure use. The Foundation’s work on the second front in clinical quality measures centers on its work to assure that an adequate pipeline of measures is available for Maintenance of Certification (MOC) by otolaryngologists and other physicians for quality improvement and quality reporting purposes. This is where the registry will play a critical role. With a registry, the Foundation will be able to utilize EHR data as well as claims data to craft quality metrics quickly for inclusion in quality reporting programs such as PQRS, Meaningful Use, and the Value-Based Modifier. Concurrently, it is also critically important that the AAO-HNSF disseminate its current measures as broadly as possible to improve patient care and outcomes. To this end, the Foundation has secured inclusion in PQRS of the adult sinusitis and acute otitis externa measures and measure groups. Academy staff has also researched every measure available in PQRS that might have applicability to Member practices and has organized all of these measures and related information on the AAO-HNS/F website at The third domain of measure activity focuses on staying abreast of changes to federal rules and regulations in the realm of quality reporting. At this point, it is worthwhile to share just what is happening with your Foundation measures for quality reporting in 2015. This is where measures have a profound impact for Members. As we noted earlier, AOE and sinusitis measures are contained within PQRS. This year, both Meaningful Use and the Value Based Modifier will be linked to PQRS. Concurrently, this is the year when fines will be levied for failure to report in PQRS with downstream ramifications into other quality reporting programs—all of which could have an impact on reimbursement in 2017. The most important point is to start early. To avoid penalties and fines, report to PQRS in 2015. Do you report to PQRS as an individual or as a group? You may report through the PQRSwizard® made available through the Academy, an EHR, or a registry. You may report either as an individual or as a group. This is an important decision to make early. Reporting as an individual If you decide to report individually, you may report using measure groups. If you choose this option, you must report on one measures group on a 20-patient sample, a majority of which (at least 11 out of 20) must be Medicare Part B patients. If you choose to create your own list of measures from the table below, you will have to select nine measures covering three quality domains and report for at least 50 percent of your Medicare Part B patients. Reporting as a group If you choose to report as a group, you must first register with CMS. Then, you will identify nine measures from the individual measures list below that cross at least three quality domains. You will report for at least 50 percent of your group’s Medicare Part B patient population. For more information on group reporting, visit The good news is the Academy has made the process of measure selection easier by having identified all the measures that could be used by Academy Members and sorted them by quality domain for ease of use. The measures highlighted in red were developed and stewarded by the Academy. To secure information on all of the individual measures contained in the table at right, visit It is clear with the passage of H.R. 2 Medicare Access and CHIP Reauthorization Act of 2015, the need for quality measures will continue well into the future. The Academy recognizes the complexity and difficulty of the CMS quality reporting and hence, the decision to invest resources into quality measurement development specific to our specialty. 2015 National Quality Strategy Domains (Individual/Claims Measures)   Patient Safety Person and Caregiver- Centered Experiences and Outcomes [Patient and Family Engagement]   Communication and Care Coordination   Effective Clinical Care [Clinical Processes/Effectiveness]   Community/ Population Health [Population/Public Health]   Efficiency and Cost Reduction [Efficient Use of Healthcare Resources] Perioperative Care: Selection of Prophylactic Antibiotic – First OR Second Generation Cephalosporin PQRS #21 Patient Centered Surgical Risk Assessment and Communication PQRS #358 Medication Reconciliation PQRS #46 Controlling High Blood Pressure PQRS #236 Preventive Care and Screening: Tobacco Use: Screening and Cessation Intervention PQRS #226 Acute Otitis Externa (AOE): Systemic Antimicrobial Therapy – Avoidance of Inappropriate Use PQRS #93 Perioperative Care: Discontinuation of Prophylactic Parenteral Antibiotics (Non- Cardiac Procedures) PQRS #22 Optimal Asthma Control PQRS #398 Care Plan PQRS# 47 Acute Otitis Externa (AOE): Topical Therapy PQRS #91 Preventive Care and Screening: Screening for High Blood Pressure and Follow-Up Documented PQRS #317 Adult Sinusitis: Antibiotic Prescribed for Acute Sinusitis (Appropriate Use) PQRS #331 Perioperative Care: Venous Thromboembolism (VTE) Prophylaxis (When Indicated in All Patients) PQRS #23 Functional Outcome Assessment PQRS #182 Diabetes: Hemoglobin A1c Poor Control PQRS #1 Preventive Care and Screening: Body Mass Index (BMI) Screening and Follow-Up Plan PQRS #128 Adult Sinusitis: Appropriate Choice of Antibiotic: Amoxicillin Prescribed for Patients w/ Acute Bacterial Sinusitis PQRS #332 Perioperative Temperature Management PQRS #193 Falls: Plan of Care PQRS #155 Asthma: Pharmacologic Therapy for Persistent Asthma Ambulatory Care Setting PQRS #53 Preventive Care and Screening: Influenza Immunization PQRS #110 Adult Sinusitis: CT for Acute Sinusitis (Overuse) PQRS #333 Falls: Risk Assessment PQRS #154 Functional Deficit: Change in Risk-Adjusted Functional Status for Patients with Neck, Cranium, Mandible, Thoracic, Spine, Ribs, or Other General Orthopedic Impairments PQRS #223 Immunizations for Adolescents PQRS #394 Adult Sinusitis: More than One CT Scan Within 90 Days for Chronic Sinusitis (Overuse) PQRS #334 Documentation of Current Medications in the Medical Record PQRS #130 Biopsy Follow-Up PQRS #265 Tobacco Use and Help with Quitting Among Adolescents PQRS #402 Appropriate Treatment for Children w/Upper Respiratory Infection PQRS #65 Radiology Exposure Time Reported for Procedures Using Fluoroscopy PQRS #145 Pain Assessment and Follow-Up PQRS #131 Appropriate Testing for Children with Pharyngitis PQRS #66 Pneumonia Vaccination Status for Older Adults PQRS #111 Reporting as individuals For physicians reporting as individuals, you may use these clinical quality measures groups or the other measures groups listed on our web site at Sinusitis Measures Group Measure #130 Documentation of Current Medications in the Medical Record Measure #131 Pain Assessment and Follow-Up Measure #226 Preventive Care and Screening: Tobacco Use: Screening and Cessation Intervention Measure #331 Adult Sinusitis: Antibiotic Prescribed for Acute Sinusitis (Appropriate Use) Measure #332 Adult Sinusitis: Appropriate Choice of Antibiotic: Amoxicillin Prescribed for Patients with Acute Bacterial Sinusitis (Appropriate Use) Measure #333 Adult Sinusitis: Computerized Tomography (CT) for Acute Sinusitis (Overuse) Acute Otitis Externa Measures Group Measure #91 Acute Otitis Externa (AOE): Topical Therapy Measure #93 Acute Otitis Externa (AOE): Systemic Antimicrobial Therapy – Avoidance of Inappropriate Use Measure #130 Documentation of Current Medications in the Medical Record Measure #131 Pain Assessment and Follow-Up Measure #154 Falls: Risk Assessment Measure #155 Falls: Plan of Care Measure #226 Preventive Care and Screening: Tobacco Use: Screening and Cessation Intervention Measure #317 Preventive Care and Screening: Screening for High Blood Pressure and Follow-Up Documented
H. BRYAN NEEL III MD, PHD DISTINGUISHED RESEARCH LECTURE“Leading the Biomedical Revolution in Precision Health: How Stanford Medicine Is Developing the Next Generation of Health Care”
The H. Bryan Neel III MD, PhD, Distinguished Research Lecture, funded by the Neel family and friends, was established to disseminate information on new developments in biomedical science to the otolaryngologic community. Lecturer: Lloyd B. Minor, MD Lloyd B. Minor, MD, scientist, surgeon, and academic leader, may be best known for identifying and coming up with a surgical correction for a disabling ear disorder called “superior canal dehiscence syndrome.” He is the Carl and Elizabeth Naumann Dean of the Stanford University School of Medicine, a position he has held since December 1, 2012. He is also a professor of otolaryngology–head and neck surgery and a professor of bioengineering and of neurobiology, by courtesy, at Stanford University. As Dean, Dr. Minor is leading the Campaign for Stanford Medicine, which seeks to sponsor innovation, transform patient care, and empower future leaders at the school. Beyond that, he challenges the U.S. healthcare system for comprehensive reforms to correct two systemic problems: very high costs, but not commensurate great results. He says it will require a team approach to both lower the cost of care and improve outcomes. He predicts technology will be a major part of the correction. Dr. Minor earned his bachelor’s and medical degrees from Brown University, and trained at Duke University and the University of Chicago medical centers. Before moving to Stanford, he was provost in The Johns Hopkins University School of Medicine. He has been honored for his research, and in 2012, was elected to the prestigious Institute of Medicine of the National Academy of Sciences.