Clinically Speaking

Open CRT: Everyone's Responsible

These days, it is nearly impossible to read a peer-reviewed article about complex rehab technology (CRT) and not see the terms “evidence-based practice” and “outcome measures.” While there isn’t a seating clinician around who doesn’t acknowledge the importance of justifying CRT and related services, I think many find it difficult to apply these concepts to their daily practice in a meaningful way.

At the Cleveland VA Medical Center, I am a seating clinician who works exclusively with adults who have spinal cord injury (SCI), multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS). I am not only responsible for performing the clinical services needed to identify their needs; I am also responsible for obtaining product specifications and any other services required to ensure their chair effectively meets their needs. I see firsthand how effectively any products I prescribe do what they were intended to do. Because we follow clients for life, l am also responsible for addressing issues that may prevent a chair from meeting their needs in the future.

These circumstances give me a relatively unique perspective with respect to evidence-based seating/wheeled mobility outcomes. The products I prescribe and the services I provide will directly affect the success of each outcome. Whenever an outcome is less than optimal, it will be my job to identify the underlying problem and come up with a solution.

ALS: An Example of Why Product Evolution Is Needed

In addition to knowing the preferences of the user, I have found that successful outcomes require three areas of expertise: (1) knowing the clinical needs of the user; (2) knowing which products are available to meet those needs; and (3) knowing how those products should be configured to meet those needs. Seldom will an individual clinician or supplier have expertise in all three areas, which is why complex rehab is a team effort.

While few would dispute a client-centered approach is essential, the person with ALS is at a distinct disadvantage. Most will not get the opportunity to become experienced users who know what they need. They won’t know exactly what lies ahead, and many will attribute difficulties using their power chairs to their ALS — not to the power chair’s configuration.

Those of us who follow this population over time gradually start to identify certain problems that will pose issues for almost every user with ALS. We will also encounter others that are less frequent, but extremely difficult problems to solve. We begin to realize that a power chair will serve different roles as the disease progresses.

We all learn from mistakes, but the user with ALS will be disproportionately affected by the time it takes to correct them. Those difficult-to-solve challenges will not die with the first user who brought the problem to our attention. At some point, we will face the same challenge again, so it is in everyone’s interest to solve it.

Few would argue that we need effective products to achieve successful outcomes, yet many of today’s products are less effective than they could be. Traditionally, custom mobility products have been developed using internal marketing information and resources. The product is introduced, and relatively few changes are made after it is released. While this may work for mass-marketed consumer products, custom mobility products are produced in low volumes in many configurations for a variety of users who have very different needs. Custom mobility products need to evolve, and sometimes the same product may need to evolve in different ways to meet the needs of different user populations.

It is generally accepted that products developed though a user-centered design process will provide greater usability than those that are not. Key concepts inherent to user-centered design are the active involvement of users, input from multiple disciplines, and an iteration of design solutions.

How the “Open CRT” Concept Could Help

Although I may have a very good understanding of the populations I work with, it isn’t realistic to expect manufacturers to have the same understanding when they develop the standard configurations of their products. Similarly, it is not realistic for a seating clinician or supplier who is not seeing many users who have ALS to know the predictable issues they need to address or to solve those infrequent, but more challenging issues. While I may have worked hard to earn “expert” status for my populations, I would be clueless if you were to ask what I need to see in the same products when they are used by kids or adults who have other severe disabilities.

Effective product configurations are required to achieve successful clinical outcomes, but it is unrealistic to expect manufacturers to introduce a new product and have it instantly meet everyone’s needs, and none of us is likely to know everything we should about our clients, products and effective configurations. Like it or not, we are all in this together.

How can we collectively take advantage of the benefits of a user-centered, iterative design process that is so essential to providing high usability with other types of products? Open CRT is a collaborative effort to identify effective configurations of custom mobility products for specific user populations through the sharing of practice-based evidence obtained during service delivery. Practice-based evidence is developed, refined and implemented during the provision of CRT/services to a specific population of users in a variety of settings. It is accrued every time we critically assess how to effectively ensure a given product provided in a specific configuration meets the needs of a particular user.

The goal of Open CRT is not to make manufacturers relinquish control over product development to the masses. And Open CRT isn’t just about manufacturers. Manufacturers don’t have a chance of knowing how their products are going to meet the needs of all these different, diverse populations. They just need to be aware that they’re never going to hit it out of the ballpark — and even if they do hit it out of the ballpark, it’s only the first inning of the game, and change is always going to be inevitable, just because this is such a complex situation.

This also isn’t some idealistic movement where all the manufacturers get together, hold hands and sing “Kumbaya.” It may mean questioning the status quo, but isn’t that what evidence-based practice and outcome measures intend to do in the first place?

Open CRT is about taking advantage of the tools of the information age to collectively identify which configurations of products may work best for specific populations. And it’s not just up to manufacturers to make that happen.

Regardless of whether you are a complex rehab supplier, a clinician or an end user of a complex rehab product, we have to be able to identify what’s working, as well as what’s not working.

If we’ve identified an effective configuration that solves a particularly challenging problem that we suspect others will also encounter, I believe we have an obligation to disseminate what we’ve learned. By taking that extra effort to put something out there, everyone benefits. Ideally, we would put it out there in a forum where others can ask questions or make suggestions.

As I identify specific configurations that work for my clients with ALS, I’ll request the same things as custom options from the manufacturer the next time. That not only makes life easier for me, but I’ve also put something out there that anyone can build upon.

Conferences like the RESNA/NCART one in July strike me as the ideal forum to exchange that type of information. While we can learn some things through workshops, the opportunity to engage manufacturers and exchange information with others is where Open CRT can have its greatest impact. If all goes as planned, some of the custom options that originated in my clinic will appear in the exhibition area. It creates a unique opportunity for others to determine for themselves if my solutions will work for their populations.

Another important tool we are not taking advantage of is the Internet. A great example of Open CRT in action is CareCure Community [http://sci.rutgers.edu/]. Much of the content is from ultralight end users who post about their experiences with products. But there’s nothing really comparable for other forms of CRT, and we’re in trouble if that’s the case. If we don’t have effective products, we’re not going to have successful outcomes. And if we don’t have successful outcomes, how do we justify our services?

Editor’s Note: Opinions in this article are those of the author and do not represent official policy or positions of the Department of Veterans Affairs.

This article originally appeared in the June 2016 issue of Mobility Management.

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