Patient-Centered Framework for Rehabilitation Research in Outpatient Settings |
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| Institution: | 1. Department of Rehabilitation Medicine, University of Washington, Seattle, Washington;2. Department of Neurology, University of Washington, Seattle, Washington;1. Department of Physical Therapy, Universidade Estadual Paulista “Julio de Mesquita Filho” (UNESP), Presidente Prudente, Brazil;2. Department of Neurology and Neurosurgery, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil;3. Department of Physical Therapy, Centro Universitario de Ensino Superior (UNICESUMAR), Maringá, Brazil;4. Department of Psychobiology, Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil;5. Department of Physical Therapy, Centro Universitário UNA, Contagem, Brazil;6. Department of Physical Therapy, Universidade Federal de Minas Gerais (UFMG), Belo Horizonte, Brazil.;1. Department of Occupational Therapy, Massachusetts General Hospital, Institute of Health Professions, Boston, MA, USA;2. Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Charlestown, MA, USA;3. Harvard Medical School, Boston, MA, USA;4. Department of Neurology, Massachusetts General Hospital, Boston, MA, USA;1. Department of Biomedical Engineering, National Cheng Kung University, Tainan;2. Division of Nephrology, Department of Internal Medicine, Chi Mei Medical Center, Liouying, Tainan;3. Department of Orthopedics, E-Da Hospital, Kaohsiung;4. School of Medicine, College of Medicine, I-Shou University, Kaohsiung;5. GEG Orthopedic Clinic, Tainan;6. Department of Orthopedics, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan;7. Division of Neurosurgery, Department of Surgery, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan;9. Department of Occupational Therapy, College of Medicine, National Cheng Kung University, Tainan;10. Medical Device Innovation Center, National Cheng Kung University, Tainan;11. Department of Public Health, College of Medicine, National Cheng Kung University, Tainan;12. Department of Public Health, College of Public Health, China Medical University, Taichung;14. Department of Orthopedics, College of Medicine, National Cheng Kung University, Tainan;15. Department of Orthopedics, National Cheng Kung University Hospital Dou-Liou Branch, College of Medicine, National Cheng Kung University, Yunlin, Taiwan;1. Physiotherapy Unit, Nª Sª del Prado Hospital, Talavera de la Reina;2. Faculty of Physiotherapy and Nursing, University of Castilla-La Mancha, Toledo;3. Research Group on Water and Health (GIAS), University of Castilla-La Mancha, Toledo;4. Toledo Physiotherapy Research Group (GIFTO), University of Castilla-La Mancha, Toledo;5. Health and Social Research Center, University of Castilla-La Mancha, Cuenca, Spain;1. Swiss Children''s Rehab, University Children''s Hospital Zurich, Affoltern am Albis, Switzerland;2. Children''s Research Center, University Children''s Hospital of Zurich, University of Zurich, Zurich, Switzerland;3. Rehabilitation Engineering Laboratory, Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland;1. Department of Clinical-Surgical, Diagnostic and Pediatric Sciences, University of Pavia, Pavia, Italy;2. Neurorehabilitation and Spinal Unit, Istituti Clinici Scientifici Maugeri IRCCS, Pavia, Italy;3. Bioengineering Unit, Istituti Clinici Scientifici Maugeri IRCCS, Veruno, Italy;4. Physical Medicine and Rehabilitation Unit, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy;5. Physical and Rehabilitation Medicine Unit, Istituti Clinici Scientifici Maugeri IRCCS, Tradate, Italy |
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| 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. |
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| Keywords: | Patient-centered care rehabilitation research data collection methods methods research design research personnel multiple sclerosis |
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