Limb Loss Registry & Evidence-Based Care in O&P

Published in Orthotics & Prosthetics on May 18, 2023

This blog is written based off our recent podcast, “Limb Loss Registry & Evidence-Based Care in O&P.”

OPGA is proud to continue supporting the Limb Loss and Preservation Registry (LLPR), a national program to improve the quality, safety, and effectiveness of treatment and preservation of limb loss. Adam Miller, president of OPGA, recently chatted with Jeff Brandt of Brandt Ventures, CPO, member of the External Collaborative Panel (ECP) for the registry, and vice president of AOPA. Together, they discussed the Limb Loss and Preservation Registry, the progress they’ve seen in the last year, and the importance of the outcomes program in providing evidence-based care in the O&P profession.

About the Limb Loss and Preservation Registry (LLPR)

The LLPR is a first-of-its-kind national quality registry effort that would be the first to link data from hospitals, prosthetists and orthotists, as well as patient-reported outcome measures, in what would be a longitudinal picture for the patient population that everyone in O&P treats.

The LLPR is simply focused on gathering large volumes of data and shining a light on how the patient population of O&P is managed. In general, orthotists and prosthetists tend to do things differently from each other. Each one claims that their way is the best, the most efficient, or results in the highest outcome. A quality registry collects a uniform set of data elements that highlight the common elements of patient care and see what the profession can learn about the patient population as a whole. In short, a healthy registry can positively affect patient care.

Goal of the LLPR

The LLPR has an opportunity to be a collaborative data hub between the different stakeholders, including hospitals and patients. Patients are a crucial piece to this initiative, as their reported outcomes are critical to their care and overall well-being. Having some type of patient-engagement platform piece to measure their outcomes is key.

The goal of any quality registry is to start to get predictive indices, meaning that clinicians can start to provide patients with more insights to their care and outcomes. If a clinician saw a new patient and they are keeping up with the registry, the data that's coming from it could potentially help the clinician get an understanding of the care needed for another patient with a similar circumstance. Think of them as part of a cohort of similar patients that are de-identified in the registry, but nonetheless have some of the same profiling characteristics, and that patient could be given some predictive insights into how their care could go as far as timelines, processes, anticipatory guidance around different clinical conditions, and so on.

Another goal would also be earlier intervention. Based on the data being seen, clinicians could intervene earlier if they see certain patterns in certain treatment pathways over time where patients had heightened periods of issues with their residual limb. They could discuss the benefits of knowing this information with their patients by looking in hindsight with similar patients.

The ability to gain insight into the overall demographics of the patient population that is served is a huge benefit to the profession. The ability to have more insight on the 2.1 million to 4 million amputees and their basic demographics would be a helpful start. From there, the data could expand upon social determinants of health, as well as discover population disparities where certain regions of the country might provide more limbs or prosthetics than another region.

All in all, the goal is to come together in a uniform way to see what the data tells us about the best practices for improved, quality patient care in O&P.

Progress of the Registry

After an in-depth designing and building process that finished at the very beginning of 2022, the registry is fully up and running. More marketing efforts have been initiated in order to share more about this registry. Pricing conversations are ongoing right now for subscriptions to dashboards, and a few partnerships have been formed to help get the message out to patients about this effort, including Western Media.

The LLPR team has also conducted multiple conversations with the national organizations and associations about how the registry effort may fit into their programs, including developing educational modules for all 15 masters' programs to access the same information about the registry.

A lot of conversations are also being held with O&P providers about implementing the registry into their practices and providing information about participating. After all, a successful registry depends on participation.

How to Participate with the LLPR

Right now, the registry is a contract effort that will be concluding by the end of 2023. In the second half of 2023, the National Institutes of Health (NIH) and Department of Defense (DOD) will approve a transition and sustainability plan, and then at that time the pricing will be firmed up. Currently, there is no cost to join the registry because it is still property of the government. There is also no charge for a hookup fee.

To join, providers would simply review and sign the participation agreement, which also includes a business associates' agreement. It's a one-year agreement and can be terminated with 30 days' notice.

LLPR Data Security and Onboarding

The data within the LLPR is encrypted and is highly secure. The registry is set up to scrub, process, and de-identify the data. The initiative is working with OPIE Software, Nymbl Systems, and OP Solutions to help data transmission go seamlessly.

The time it takes for providers to input their data into the registry is estimated to take less than 10 minutes. A frequency of exported data can be set up however often the provider wishes, and then it'll take a few minutes to export and then load that exported file into the registry for transmission. The overall process is very simple and clean. The onboarding efforts of the practice are also minimal and simple.

Current Supporters

The list of supporting partners who have helped advance the registry’s growth is ongoing. At the end of 2022, the registry partnered with BData, based in Minnesota, and one of the comparable organizations that they work with is the American Burn Association. The folks at BData utilized their expertise by providing mock dashboards to look at some early data that's in the registry.

The American Orthotic & Prosthetic Association (AOPA) and the American Academy of Orthotists and Prosthetists have also been very supportive in getting the word out, answering questions, and providing awareness about the registry. The American Board for Certification in Orthotics, Prosthetics and Pedorthics (ABC), the Board of Certification/Accreditation (BOC), the Amputee Coalition, and others have also shared their message and helped promote this effort. There is also a running list of hospital systems and O&P providers that have joined the initiative, as well as other partners.

LLPR Impact on Policy and Advocacy for O&P

There is enormous potential for improved policy based on the results of the LLPR. An example right now is that the Government Accountability Office (GAO) is in the process of responding to a letter from a few senators about forming a work group and looking into questions regarding provisions of orthotic and prosthetic care, including what seemed to be a fragmentation of care, outdated data, and more. With a collaborative data hub such as the LLPR, some of those questions could be answered. A successful registry depends on participation, and by having as many stakeholders as possible participate in a robust, rich registry, questions about the O&P profession could easily be answered in an effective, sustainable way, instead of speculation.

From a policy and advocacy standpoint, what better way to build any new policy or advocacy effort than referring back to this transformational pillar of the registry? The registry should ideally be the go-to source for all thing O&P.

For more information about the registry, where it’s headed, or how to get involved, visit llpregistry.org or email info@llpregistry.org.

Listen to the original podcast episode here.

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