Q: How did you become involved in the LLPR?
A: Kenton Kaufman, MD, from Mayo Clinic reached out to me asking if I would represent the O&P patient care provider stakeholder group, as part of the External Collaborative Panel (ECP), which is essentially a working advisory board that was established to design, build, and operationalize the LLPR. I believe there were at least 17 of us in total across roughly seven stakeholder holder groups.
Q: Please explain your involvement in helping the video project come to fruition.
A: I had worked with the producer, Russ Hodge at 3Roads Communications in Maryland, on numerous video projects bringing patient stories to life during my 17 years of owning/operating Ability Prosthetics & Orthotics. He understands and appreciates the project and patient population. In early 2023, I knew we would have the ECP together for one of our in-person milestone meetings, so I shared with [Kenton] my idea that I could engage Russ to conduct interviews while he had access to the group. In the same hotel as the ECP meeting, [we] had a custom step-and-repeat banner made, and Russ conducted the interviews and subsequently wrote the script to tie everything together. [A step-and-repeat banner is a visual backdrop with a repeating pattern. It is often seen at events, red carpets, and photo opportunities for name recognition.]
Q: In less than five minutes, this video produces a wealth of information on the importance of the LLPR. What can be done to get the word to those who can and will benefit from it?
A: [We need] continued awareness efforts like news stories on the registry and promotion partnerships with AAOP, AOPA, ABC, BOC, NCOPE, NAAOP, OPGA, CARF, APTA, AOTA, and many others. [And to] continue to grow interest from the manufacturers in the profession as they are keenly interested in learning more about how their products perform longer term on patients.
As you know, the LLPR is now operated by a joint venture between the Amputee Coalition and the Thought Leadership & Innovation Foundation, where the AC is a perfect partner home and provides the registry effort a continued patient-centric platform in which to grow. Additionally, the O&P Foundation has also partnered to create six registry subscriptions at no cost to encourage and promote registry use and data literacy in the profession. The recipients will present at the national conferences, among other benefits, to drive continued interest and education around quality data and its use in everyday clinical practice. Lastly, the LLPR submitted a journal article last month describing the why and how we built the registry. I will be writing another article solely from the perspective of the O&P patient care provider, highlighting use cases where the LLPR data allowed for earlier intervention and/or improving predictability of performance.
Q: Given the number of those with amputations worldwide, why has it taken so long to start something as crucial as LLPR?
A: Registry databases are expensive to build: in time, convening stakeholder expertise, as well as the actual dollars. I believe the LLPR is a national treasure as I don’t believe the profession would have ever gotten it built by “passing the hat” so to speak. We are grateful to the Department of Defense and National Institutes of Health for providing the funding to the Mayo Clinic to bring the registry to life. It is the first ever to connect hospitals, O&P providers, and patient self-reported data together over the course of time.
Q: You’ve had a long and successful career in O&P. In addition to the LLPR, what else are you doing professionally?
A: I have made a few investments in earlier stage products with a focus on quantifiable performance impact to the patient while simultaneously providing practitioners with productivity gains in daily practice. We can and should be leveraging all technology at this point to build a better outcome and experience for the patients we serve. I continue to remain active with advisory board positions at two of the MSPO programs as this is a way to reach and impact the future. I am also working with Bdata, the healthcare analytics company that I had the good fortune of working with on the registry, to continue to advance some key data initiatives across the entire O&P profession.
