Harnessing the power of patient engagement in evaluating a novel brace for knee osteoarthritis: a co-produced commentary
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2024-10-24
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Abstract Introduction Patient oriented research (POR) invites patients to partner with researchers, clinicians, and other stakeholders, incorporating diverse perspectives to generate scientific evidence meaningful to all parties involved. We adopted a POR approach for this study evaluating the feasibility of conducting a randomized control trial of a novel tri-compartment offloader brace for knee osteoarthritis. We involved patients as partners to enhance study design, implementation and interpretation of key outcomes. Approach Patient involvement consisted of two patient leaders and five patient advisors. Patients participated in 2 virtual focus groups to discuss study outcomes, protocol, results and knowledge translation. Patients were involved in all aspects of the research cycle. Outcomes Patient feedback resulted in changes to study design, documentation, participant recruitment, data collection, results interpretation and knowledge dissemination, improving the participant experience and aligning study outcomes with patient priorities. Study participants showed a high level of protocol adherence and follow-up rates were excellent. We experienced several unexpected benefits including genuine friendships, a deeper understanding of the patient experience, a more pragmatic approach to clinical research, and leadership opportunities for patients. Recommendations We agreed on POR “non-negotiables” to ensure a positive experience for everyone, including creating a safe and comfortable environment, being genuinely receptive to patient feedback, and providing appropriate supports for patients. We strongly recommend that researchers (1) involve patients as early as possible, (2) provide ample and equal opportunities for all patients to be involved, and (3) address system hierarchy by involving patients as equals and fully considering all patient ideas from the beginning of the project. Conclusions While POR is a learning process that is often more challenging than the traditional clinical research approach, the benefits are well worth the additional time and effort required to do it well. Over time, our team experienced a cultural shift and evolution from a top-down research approach to a more inclusive approach considering patient voices as equal to those of researchers. Patient involvement in all aspects of the research process, from question development to results interpretation and dissemination is integral to clinical research advancing equitably.
Plain English Summary Involving patients as partners in research can be challenging. However, the benefits are well worth the additional time and effort required to do it well. Patients improve the relevance, success and impact of clinical research, and are central to clinical research advancing. We partnered with seven patients from the community to conduct a research study assessing the effectiveness of a new knee brace for people with knee osteoarthritis. Patients participated in 2 virtual Zoom discussions and were involved in all aspects of the research process. The feedback received from patients led to many helpful changes to the study design, documents, recruitment strategies, data collection, and how to understand and share our results. These changes made the study more aligned with patient priorities and improved participants’ experience. Study participants followed study instructions and the majority completed the study. Our team also experienced many unexpected benefits of involving patients in research including genuine friendships, a deeper understanding of the patient experience, a more practical approach to clinical research, and more leadership opportunities for patients. We agreed that for everyone on the team to have a good experience, it’s important to create a safe and comfortable environment, really listen to and consider patient input, and provide patients the tools and trainings they need to fully participate. We recommend that researchers involve patients in their studies as early as possible, give patients lots of opportunities to be involved, and involve patients as equals, considering their ideas from start to finish.
Plain English Summary Involving patients as partners in research can be challenging. However, the benefits are well worth the additional time and effort required to do it well. Patients improve the relevance, success and impact of clinical research, and are central to clinical research advancing. We partnered with seven patients from the community to conduct a research study assessing the effectiveness of a new knee brace for people with knee osteoarthritis. Patients participated in 2 virtual Zoom discussions and were involved in all aspects of the research process. The feedback received from patients led to many helpful changes to the study design, documents, recruitment strategies, data collection, and how to understand and share our results. These changes made the study more aligned with patient priorities and improved participants’ experience. Study participants followed study instructions and the majority completed the study. Our team also experienced many unexpected benefits of involving patients in research including genuine friendships, a deeper understanding of the patient experience, a more practical approach to clinical research, and more leadership opportunities for patients. We agreed that for everyone on the team to have a good experience, it’s important to create a safe and comfortable environment, really listen to and consider patient input, and provide patients the tools and trainings they need to fully participate. We recommend that researchers involve patients in their studies as early as possible, give patients lots of opportunities to be involved, and involve patients as equals, considering their ideas from start to finish.
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Research Involvement and Engagement. 2024 Oct 24;10(1):108