As the Manager of Health Policy and Research at the American Orthotic & Prosthetic Association (AOPA), Dr. Susannah Engdahl works to advance a broad array of advocacy initiatives at the state and federal level that are designed to help people obtain access to the prosthetic and orthotic care they need. Her efforts are informed by her own experience; in addition to being an advocate and a biomedical researcher, Susannah brings a third perspective to the table: she has congenital limb differences affecting all four limbs.

Orthotics and prosthetics have been part of Susannah’s life since an early age. She started using supportive inserts in her shoes as soon as she learned to walk, and myoelectric prosthetic hands when she was three. Susannah says that these devices have been instrumental in allowing her to lead an active and independent life.

“It wasn’t until I was preparing for college that I began thinking critically about how my prosthetic hands lacked much of the functionality of anatomical hands,” Susannah explains. “Around that time, I also started meeting other people who wore prosthetic hands but had less success using them than I did. I realized that even though I had been satisfied with my prostheses while growing up, there was still a lot of work to be done towards improving quality of life for people with limb loss or limb difference.”

That realization was a major factor in Susannah’s decision to pursue a Ph.D. in biomedical engineering and conduct her own research into functional outcomes for people who use upper limb prostheses.

In fact, it was during graduate school when Susannah first learned about the Orthotics and Prosthetics Outcome Research Program (OPORP), when she and her Ph.D. advisor, Dr. Deanna Gates, applied for and received a fiscal year 2015 (FY15) Prosthetics Outcomes Research Award – Funding Level 1, to quantify biomedical outcomes for people who use different kinds of upper-limb prostheses. The award supported several of the research projects that contributed to Susannah’s dissertation.

While in graduate school, Susannah also observed how insurance policies and high out-of-pocket costs often limited patient access to the latest clinically proven technologies, as well as technologies still under development. According to the Healthcare Cost and Utilization Project, in 2009 alone, for example, amputation-related hospital costs totaled over $8.3 billion in the United States. Susannah’s interest in learning more about this issue led to a fellowship with the National Association for the Advancement of Orthotics & Prosthetics, which introduced her to many of the policy-related issues facing the orthotics and prosthetics community, and how advocacy can effect change.

Along with her colleagues at AOPA, Susannah is working to advance federal legislation to reduce Medicare fraud and abuse related to orthotic and prosthetic benefits. At the state level, AOPA advocates for expanding children’s access to prostheses and orthoses designed for physical activity, and expanding coverage for cranial remolding orthoses. These are just some of the initiatives AOPA is spearheading to help improve the quality of orthotic and prosthetic care for people who need it.

Susannah says she values serving as a consumer programmatic reviewer for the OPORP because it is a great way to identify emerging research that she and other advocates can discuss with policymakers.

“Those of us who are regularly immersed in the orthotics and prosthetics community can easily speak to the value that care provides to patients’ quality of life because we witness it every day,” Susannah explains. “Supporting those stories with data further emphasizes the value of orthotics and prosthetics care to policymakers who might be unfamiliar with our community’s needs.”

Since its inception in FY14 through FY22, appropriations totaling $110 million have been directed to the OPORP to support research to improve the health and well-being of orthotic and prosthetic users. Outcomes research funded by the OPORP will inform users as well as care providers and policy makers to make decisions that will impact quality of life and return-to-duty/work rates.

Susannah’s experience as a prosthesis user, researcher, and advocate allows her to apply all three perspectives in discussions about OPORP investment strategies and funding decisions.

“I believe that merging these different perspectives is critical for making informed decisions about what paths are most likely to create meaningful and widespread advancements in orthotics and prosthetics care,” she says.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.