American Joint Replacement Registry: 618 Hospitals, 4, 500 surgeons, Robust Data
Elizabeth Hofheinz, M.P.H., M.Ed. • Mon, February 1st, 2016
To get the right diagnosis, you must ask the right questions. On a macro scale, that means asking a wide range of well-thought out questions and getting them into an enormous database that is regularly mined by physicians and hospitals for the benefit of patients.
The American Joint Replacement Registry (AJRR) is the tool that fits the bill.
Joint replacement registries, in general, collect information on a combination of hip replacements, knee replacements (both total and unicompartmental), shoulder replacements, ankle replacements and elbow replacements.
Since the first registry was established in 1975 in Sweden, there have been 31 national registries established around the world.
The early registries, almost all from Scandinavian countries, only tracked surgeon and implant performance and the main outcome collected was implant failure. Recently, however, registries are adding patient-reported outcome measures. The AJRR is adding additional dimensions to the range and quantity of data collected.
Here is a list of all the major international arthroplasty registries courtesy of the International Society of Arthroplasty Registers (ISAR).
The American Joint Replacement Registry
Daniel J. Berry, M.D. is head of the AJRR Board of Directors as well as past chair of Orthopaedic Surgery at Mayo Clinic in Minnesota. He recently agreed to speak with Orthopedics This Week about the remarkable progress he and his organizations have made creating the first truly national and impactful American arthroplasty registry.
Dr. Berry said, “The AJRR started out with modest data collection—Level I demographic data such as what implant was used and what type of procedure was performed. If you analyze that over time (and you also have information on which procedures were revised) then you can get a lot of information on patient/implant/healthcare system factors that affect the need for revisions.”
“We are now moving on to Level II data, which will give users additional details on patient characteristics and complications. This includes, for example, details on the medical status of the patient and specifics on the level of surgical complexity. The depth and scope of this information gives users the power to do risk adjustment and thus benchmark themselves against national data in a way that most surgeons would trust. Most hospitals and surgeons want to get their own data back in a useful form that will help them make the appropriate interventions. So the Level II data allows us to ask, ‘How do patient comorbidities and certain aspects of patient care effect outcomes of surgery?’”
“Recently, we have moved to a Level III patient-reported outcome (PRO) platform, an extra dimension of detailed information regarding how patients are affected by disease processes or by interventions. PRO data is information that has not been modified by caregivers or hospitals in any way. We are asking questions such as, ‘How were you (the patient) before and after surgery with regard to pain, functioning, and overall health?’”
“In designing this system we attempted to be consistent with outcome measures used nationally and internationally for hip and knee arthroplasty. The patient survey includes joint-specific outcomes measures on things such as hip disability, osteoarthritis outcomes, etc. Most national groups want to have more general information about how procedures affect patient satisfaction and functioning. The most commonly used quality of life measurement tools are the Patient Reported Outcomes Measurement Information Systems (PROMIS)-Global and the Veterans Rand 12 Item Health Survey (VR-12). As for disease-specific measures, the Hip dysfunction and Osteoarthritis Outcome Score/Knee injury and Osteoarthritis Outcome Score (HOOS/KOOS) are frequently relied upon.”
All of which does not come for free. “We are fortunate, ” says Dr. Berry, “to have funding from a variety of sources, including the orthopedic societies. The orthopedic manufacturing industry has also participated at a high level because they understand that outcomes reporting will only increase in importance…and that it must be done in a careful and unimpeachable manner. In addition, part of the AJRR business model is the collection of modest subscription fees from hospital-users. This cost can be spread over the 600+ hospitals that are now members of our network.”
“Hospitals are thrilled about the AJRR because they have been looking for a cost-effective platform that allows them to collect information on hips and knees. The software system is designed to be seamless and to allow the electronic transfer of data with only a modest amount of work on the part of the hospital. Hospitals know that this PRO data could go a long way toward demonstrating their value in this new era of quality measurement.”
“There is a growing recognition in the orthopedic community that being part of a registry has two benefits: one is that such participation gives you the big picture benefit of knowing that all of the work you do is in the database that will eventually benefit all joint replacement patients. The other benefit is specific to the practice or hospital. You have comparative data on quality improvement initiatives that allows you to benchmark yourself against national data. On a personal level, surgeons can use this data to participate in the Physician Quality Reporting System from the Centers for Medicare and Medicaid Services (CMS), which should help them avoid penalties. And eventually, we hope participation in the registry will have other valuable benefits. For example, physicians might make use of the registry for recredentialing because AJRR will be a data platform.”
“Most countries that have adopted a registry system have one major national registry; our goal is to be that registry for North America. It’s fair to say that no other U.S. registry has anywhere near the breadth and scope of data that the AJRR has been able to collect. We were recently endorsed by the American Association of Hip and Knee Surgeons (AAHKS) as being the organization’s official registry. This is so important, in part because AAHKS has over 2, 700 members that come from the U.S., as well as members from 38 other countries.”
“AJRR has made unbelievable progress in the last two-three years. At this point we have 618 hospitals and nearly 4, 500 surgeons, with all 50 states represented. CMS has told the orthopedic community that as of summer 2016 we will have access to claims data, meaning that we will be able to track longitudinal information on how all CMS patients in the registry are doing—even if they have subsequent surgery at a hospital that is not submitting data to us.”
“This year we will continue to recruit hospitals and to refine how our data are submitted and returned to hospitals. This entails converting everything to make it compatible with ICD-9 and ICD-10 codes. We are obtaining detailed information about all implants used in U.S. in a library form that allows us to track the characteristics of each implant. We will be able to say, for example, ‘Does this fall into the category of cemented/uncemented?’ The data will give us power to analyze outcomes at a granular level.”
“Not only are we now the largest registry in the country, we go to great lengths to ensure that our leadership reflects the views of all parties involved. Members of our Board of Directors include surgeons, industry representatives, patient advocates, and hospital administration. And our Public Advisory Board does a terrific job of representing the concerns, interests and questions of our patients. I think that over the course of a decade the AJRR will fundamentally change arthroplasty in North America.”
2015 AJRR Annual Report: Click Here