Open CRT: Everyone's Responsible
- By Steve Mitchell
- Jun 01, 2016
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
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.