Abstract
Conducting high-quality clinical research is dependent on merging scientific rigor
with the clinical environment. This is often a complex endeavor that may include numerous
barriers and competing interests. Overcoming these challenges and successfully integrating
clinical research programs into clinical practice settings serving rehabilitation
outpatients is beneficial from both a logistical perspective (eg, supports efficient
and successful research procedures) and the establishment of a truly patient-centered
research approach. Leveraging our experience with navigating this research-clinical
care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation
Research, a model for integrating patient-centered research in an outpatient clinical
setting that incorporates a collaborative, team-based model encompassing patient-centered
values, as well as strategies for recruitment and retention, with a focus on populations
living with disabilities or chronic diseases; (2) describes application of this framework
in a comprehensive specialty multiple sclerosis center with both general strategies
and specific examples to guide adaptation and implementation in other settings; and
(3) discusses the effect of the framework as a model in 1 center, as well as the need
for additional investigation and adaptation for other populations. The 5 interconnected
principles incorporated in the Framework and which prioritize patient-centeredness
include identifying shared values, partnering with the clinical setting, engaging
with the population, building relationships with individuals, and designing accessible
procedures. The Patient-Centered Framework for Rehabilitation Research is a model
presented as an adaptable roadmap to guide researchers in hopes of not only improving
individual patients’ experiences but also the quality and relevance of rehabilitation
research as a whole. Future investigation is needed to test the Framework in other
settings.
Keywords
List of abbreviations:
MS (multiple sclerosis), NMSS (National Multiple Sclerosis Society), UW MS Center (UW Medicine Multiple Sclerosis Center)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: March 16, 2022
Accepted:
February 18,
2022
Received:
January 6,
2022
Footnotes
Supported in part by the Nancy and Buster Alvord Endowed Professorship in Multiple Sclerosis Research held by Dawn M. Ehde, PhD. We have no conflicts of interest to report.
Disclosures: none.
Identification
Copyright
© 2022 by the American Congress of Rehabilitation Medicine.
