David G. Lewallen, MD
“So far, three sites have sent us data on more than 1,000 patients as part of our trial, which was designed mainly to test the mechanisms for data reporting and to help us understand the challenges that hospitals may face when using our Web-based system,” he said.
According to Dr. Lewallen, after analyzing all the “lessons learned” from the pilot program, the AJRR plans to go live with the final model for national data collection later this year.
Aiming for 90 percent participation
Currently, the AJRR is obtaining level 1 data, which includes basic identifying information related to patients, surgeons, hospitals, and procedures performed. All of this data, except for laterality (right and/or left) and ICD-9 codes, is already submitted to Centers for Medicare & Medicaid Services for billing, noted Dr. Lewallen.
He emphasized that the AJRR is also very interested in “collecting comorbidity data and higher levels of outcomes data,” but acknowledged that “additional funding and infrastructure support will be needed.”
The AJRR’s goal for the next 5 years is to obtain 90 percent participation of the approximate 5,000 hospitals in the United States where arthroplasty procedures are performed.
“We’re getting a receptive ear from payers in terms of the issue of incentivized reporting,” he said. Several groups that have oversight of medicine in this country may accept such reporting as a quality measure.
Using a “multi-stakeholder model”
Dr. Lewallen noted that the AJRR is “committed to a multi-stakeholder model” that he reported has been working in a very collegial fashion.
“The AJRR board of directors has representation from payers, orthopaedic surgery, industry, and, perhaps most importantly, from the public,” said Dr. Lewallen. “We have a patient public advisory board, and one of their members is a voting member on our board.”
The registry also employs a shared stakeholder funding model, whereby no one stakeholder will pay the majority of the expenses, he said.
Dr. Lewallen explained that the AJRR finalized its detailed business plan with the help of AJRR board member Kevin J. Bozic, MD, MBA, and the other members of the registry’s business plan workgroup.
“We had representation from all stakeholders in this very important group,” he said. “Everybody will have a chance to pay in some way. We don’t expect it to be equal, but we do expect all of our stakeholders to meet their commitments.”
The data the AJRR collects will help finance the registry, said Dr. Lewallen.
“We need to get to a point where we have the data to sell to the stakeholders, if you will,” he said, noting that the startup funding required has been estimated at $7 million. Reaching those fundraising goals, said Dr. Lewallen, will require additional short-term contributions from the stakeholders.
“We’re also receiving grant support from various orthopaedic organizations,” he continued, “and there may be opportunities for individual orthopaedic surgeons to contribute through the Orthopaedic Research and Education Foundation.”
In the long term, said Dr. Lewallen, the AJRR plans to charge subscription fees to those who want more detailed data.
“We hope to obtain grants from payers and the government,” he said, “as well as a commitment to incentives for institutions and surgeons that participate.”
He added that the AJRR “needs substantial support from industry with this model. We’re under discussion currently with our industry colleagues about that.”
Fine-tuning the process
Although the AJRR has made substantial progress in the past year, significant challenges remain.
“We need to streamline the process for getting institutions on board,” he said. “The work required right now is not sustainable, so we’ve got to come up with a way of getting hospitals on board without the current time and effort.”
But Dr. Lewallen stressed that it has been “an exciting year—one that’s really involved tremendous collaboration among the stakeholders and a willingness for all of us to listen to the perspective of other groups, all of whom participate in the chain of care.”
“Our goal is to improve arthroplasty care,” he said. “To do that, we believe that we need everyone at the table who is involved in providing that care so they find the data credible and will act upon it.”
A broader perspective
Several other speakers—including Henrik Malchau, MD, PhD, who helped develop the Swedish joint registry and has served as an advisor in the development of the AJRR—discussed registries in countries around the world. Robert E. Durgin, senior vice president, quality/regulatory/clinical affairs at Biomet, Inc., provided an industry perspective on issues facing the AJRR.
Jennie McKee is a staff writer for AAOS Now. She can be reached at firstname.lastname@example.org