AAPM&R’s Registry and Shirley Ryan AbilityLab—Teaming Up to Provide Innovative, Data-Centric Care

Quality & Practice

Mark Huang, MD, FAAPMR and James Sliwa, DO, FAAPMR (left to right).

Mark Huang, MD, FAAPMR
Chief Medical Information Officer

James Sliwa, DO, FAAPMR
Chief Medical Officer and Senior Vice President

AAPM&R’s Registry recently announced its first six sites for the Ischemic Stroke and Low Back Pain data collection programs—among them, Shirley Ryan AbilityLab in Chicago, IL. We recently spoke with Drs. Huang and Sliwa who helped champion the Registry to find out what informed their institution’s decision, why the Registry is important to physiatry, and how other others can get involved.

As members of the AAPM&R Registry Steering Committee, both helped lead the strategic planning and development of the Registry, and are now its early adopters. It was a natural “next step” as they understand the value of data, how it can be used to improve patient care and outcomes and, ultimately, demonstrate the value of the specialty as a whole. Both also see the Registry as a BOLD example of AAPM&R’s mission—leading the advancement of physiatry’s impact throughout health care—and encourage other members to become part of this future-focused initiative and a way to advance the specialty and Academy vision including ensuring that physiatrists are vital in optimizing outcomes and function early and throughout the continuum of patient care.

To Join or Not to Join the Registry? There Wasn’t a Question

The question to join the Registry and participate as one of the early adopters was an easy, but well informed, decision for the physician leaders at Shirley Ryan AbilityLab. “Prior to the development of the Registry, there was very little national, aggregate data and research in the specialty of PM&R. It was a subjective specialty, but that’s changing,” said Dr. Sliwa. “We need to not only establish outcome measures, but we need to be able to gather that data, analyze it, and then use that information to improve the specialty in the future.” 

This sentiment is echoed by Dr. Huang, who believes the Academy is the right organization to lead this effort. “You can’t escape the fact that we need quality measures focused on rehabilitation services. The current measures out there are very weak and they don’t focus on rehabilitation specifically,” he said. “We (physiatrists) need to develop those measures because, clearly, no one else is going to do it. As a specialty, we’re going to have to help facilitate the coordination of this development with specifications that accurately measure, track and report physiatric care.”

Data collection and quality improvement are top-of-mind at Shirley Ryan AbilityLab. According to Dr. Sliwa, “It ties in directly with our organization’s approach: to integrate clinical care with research, to gather and analyze data, and to make a significant impact on outcomes. And so, the Registry is a component of that model. Rehabilitation should not be just a process; Rehabilitation should be about improving outcomes.”

Dr. Huang takes it a step further and talks about sharing and comparing the data available through the Registry. “Yes, you can collect and keep the data internally, but using the Registry allows for comparison among other organizations and providers—information-sharing and learning. The Registry allows for that data to be handed down and lets you see how you are doing without operating in a vacuum.”

Working Cross-Functionally to Secure Buy-In

Clearly, Drs. Huang and Sliwa were advocates for Shirley Ryan AbilityLab to be a Registry participant, but they couldn’t make that decision alone. They needed to secure buy-in from the organization’s executive team and other departments because an initiative of this scale is a cross-functional endeavor requiring all departments to come together in order for it to be successful.

“We had buy-in and already knew its value. However, we still needed to take it to our Chief Operating Officer and IT because it’s an investment in time and resources,” said Dr. Sliwa. “We presented it in a future-oriented manner—as a tool that will help us to provide data and demonstrate the value we contribute across the specialty to impact care in this country.”

He continued, “When you have that future-focused vision, the drive to improve yourself, your institution and your specialty as whole, then it becomes easier to get IT and other departments to support that vision. That’s leadership!” 

Dr. Huang reinforces this point. “It has to come from top-down. You have to get that leadership buy-in first. Otherwise, it’s going to fail. Each person who is trying to advocate for the Registry has to do a deep-dive, look at their organizational mission and vision statements, and see how they can tie-in the value of the Registry to those. Because once you can do that, you’re going to get leadership buy-in and, then, ultimately align with other departments like IT to prioritize it.”

Now that Shirley Ryan AbilityLab had buy-in from its various departments, the challenge going forward is maintaining momentum. Because the Registry is a long-term commitment (of at least three years) and requires highly-motivated, QI-centric centers that are currently collecting or ready to begin collecting Patient-Report Outcomes (PROs), the organization is going to have to stay focused on the end-result—providing data to demonstrate physiatry’s value and improve patient care, not just for the specialty but for medicine at large.

“Without the data that the Registry will provide, it’s going to be tough for the specialty to move forward,” said Dr. Huang. “Everyone is doing this piece-meal. We need to do this in a coordinated, collaborated effort, and the Registry can help with that. We have to think long-term—‘What is the vision five and 10 years from now?’”

As the primary medical society for PM&R, Dr. Sliwa sees the role of the Academy to lead its members and the specialty for both the short- and long-term, and uses an interesting analogy to make his point.

“I would liken the Registry to global warming—you may not see the effects for 10 years. But if you don’t do something now, 10 years from now we could have a real problem.” In terms of collecting data, he doesn’t believe that the path we’re on right now is the correct path for the specialty. “We have to do something, and the Registry would be the first step—a robust data warehouse that the specialty can use to not only prove its value, but improve care for all the patients that need rehabilitation across the care continuum.”

Both Drs. Huang and Sliwa encourage other members to learn more and help contribute to this initiative. “We’re laying the groundwork to develop measures that are more relevant to the clinicians who provide rehabilitation services. We don’t believe rehabilitation should be just a process. Rehabilitation should be about improving outcomes and changing the face of the specialty. The only way to do that is by standardizing outcomes, analyzing the data and proving that what you do is making a difference,” said Dr. Sliwa.

Thank you to our early adopters.


Currently Recruiting

AAPM&R’s Registry is currently recruiting institutions and practices that are committed to quality improvement for data collection in both ischemic stroke and low-back pain. If you are interested in learning more about our Registry, please contact registry@aapmr.org.