Carol Haywood, Gabriela Martinez, Elizabeth A. Pyatak, Kristine Carandang; Engaging Patient Stakeholders in Planning, Implementing, and Disseminating Occupational Therapy Research. Am J Occup Ther 2019;73(1):7301090010p1-7301090010p9. doi: 10.5014/ajot.2019.731001.
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© 2019 American Occupational Therapy Association
Patients1 are experts on their own lives and the ways in which an illness, injury, or disability affects their health, activity, and quality of life. With its longstanding foundations in participatory action research, patient engagement has been gaining momentum across health care and related research. This momentum is supported by investments from several key research and federal policy–related organizations, including the Patient-Centered Outcomes Research Institute, National Institutes of Health, and Agency for Healthcare Research and Quality. Occupational therapy practitioners are uniquely positioned to champion patient collaborations. In this article, we discuss ways in which patient perspectives can be embraced in occupational therapy research, and we share insights from a research planning collaborative with adolescents and young adults that was led by occupational therapy researchers.
Initially, I wasn’t sure how we were defining “chronic conditions,” and I wasn’t sure I wanted to be affiliated with that term. I was never told that I have a chronic condition. In this project, I felt a bit out of my comfort zone. We all had lifelong challenges, but not everybody was in a wheelchair or had visible challenges like me. When I opened up to the group about this, I was surprised to find out how much we grew from this conversation. My perception expanded when I thought about a range of illnesses and conditions, and I realized that I actually had more in common with the other patient partners than I thought.
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