Momentum is building,” said David G. Lewallen, MD, chair of the American Joint Replacement Registry (AJRR) board of directors, during an AJRR informational session at the 2012 AAOS Annual Meeting. “Multiple entities have committed to the effort.”
Reflecting on “lessons learned,” Dr. Lewallen and the other registry representatives outlined the AJRR’s plans to expand the registry’s reach and recruit more institutions to participate.
Lessons from the pilot program
Kevin J. Bozic, MD, MBA, a member of the AJRR board of directors, headed up the work group evaluating the results of the pilot program completed in August 2011 that yielded data on more than 3,600 TJA procedures. The AJRR is currently focused on collecting level-one data including basic identifying information on patients, surgeons, hospitals, and procedures.
“We learned a lot about the challenges institutions faced,” he said, referring to feedback from the pilot sites on patient privacy. “Certainly, data encryption is a concern to everyone.”
A particularly difficult issue, he said, involves patient identifiers.
“The goal of registries is to track patients over time,” noted Dr. Bozic. “Many hospital-based registries use de-identified data, which enable them to accumulate data on large numbers of patients quickly. But when you get into identified data, which are absolutely necessary to track patients over time and across sites, you face legal and privacy issues.
“We’re attacking this issue on many fronts,” continued Dr. Bozic. “We’re working at the national level to obtain guidance from the federal government on what the real risks are to hospitals related to participating in registries.” Pilot sites also provided feedback on issues such as participation agreements and business associate agreements, which was vital in creating a standard contract.
Implementing new technology
Another key “take away” from the pilot program, said Dr. Bozic, was the need to collect data in a more efficient manner.
“We received a number of comments about some of the idiosyncrasies associated with the data collection tool we used,” he said. “We heard from our pilot sites that we needed to move away from a time-consuming manual data entry process to a more automated process.”
According to Dr. Bozic, the AJRR plans to move forward with a different software product that captures batch data rather than individual data, so the data collection process runs more smoothly.
“Much of the data needed by the registry is already collected by hospitals for administrative claims purposes,” he said. “We don’t want to duplicate efforts.”
Recruiting new sites
Caryn D. Etkin, PhD, MPH, director of research for the AJRR, noted that the registry, which continues to add staff members, is currently collecting data from hospitals all across the country.
“Implementation is at various stages in 80 participating hospitals, and discussions are underway with more than 100 more hospitals,” she said.
According to Dr. Etkin, much of the AJRR’s recruitment efforts are focused on large hospital networks, high volume medical centers, and institutional collaboratives.
With the recent addition of data on 11,000 TJA procedures from Massachusetts General Hospital in Boston, she said, the AJRR has data on more than 19,000 procedures. The registry’s business plan calls for enrolling an additional 150 hospitals this year.
“We think we can reach that target,” she said. “We intend to add 800 institutions next year, and another 1,000 institutions in 2014, when we will reach critical mass.”
Collaborating with other registries
The AJRR has secured formal commitments to collaborate with other registries based in the United States, such as the California Joint Replacement Registry and the Virginia Joint Registry.
“The vision is for hospitals to report one time,” said Dr. Lewallen, noting that a hospital submitting data to any of the collaborating registries would simultaneously populate the AJRR database.
Two-way data sharing, emphasized Dr. Lewallen, is another critical issue. For example, he explained, if a patient who underwent primary TJA in California later undergoes revision TJA in Minnesota, the California hospital should be informed to enable it to analyze its outcomes.
The AJRR, noted Dr. Lewallen, is also collaborating with international organizations, including the International Society of Arthroplasty Registries (ISAR) and the International Congress of Orthopaedic Registries (ICOR).
He emphasized the important role that mentors from registries in places such as Scandinavia, New Zealand, Australia, and the United Kingdom have played in helping the AJRR develop its capabilities. In particular, he expressed his gratitude to Henrik Malchau, MD, PhD, who helped develop the Swedish Hip Arthroplasty Register. Dr. Malchau, of Massachusetts General Hospital in Boston, has not only served as an advisor to the AJRR, but also assisted with the AJRR’s recent acquisition of data from his institution.
Benefits of the AJRR
According to Dr. Lewallen, the registry will serve as a kind of “trip wire” for issues with implants, with a goal of “maturing into a much more powerful tool for looking at overall improvement in arthroplasty care in this country.
“The AJRR can also coordinate advocacy efforts related to registry legislation, regulatory oversight, and incentives versus mandates for data reporting,” he continued.
“The shift in U.S. demographics and the economics of joint replacements are predicted to be pretty staggering,” he said, noting that the registry can help ease the financial strain by reducing the revision burden.
According to Dr. Maloney, the AJRR requires several things to ensure long-term success, including the multistake holder governance it already has in place and a stable funding model. The registry currently has funding commitments through the end of 2013.
Dr. Lewallen is excited about continued expansion and grateful for the support the AJRR has received.
“I want to thank the Academy leadership,” he said. “We wouldn’t be here if it weren’t for their commitment.”
Surgeons and hospitals interested in learning more about the AJRR should visit www.ajrr.net or call 847-292-0530.
Jennie McKee is a staff writer for AAOS Now; she can be reached at firstname.lastname@example.org