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Patient Engagement in Kidney Research: Opportunities and Challenges Ahead
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- Author(s) / Creator(s)
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Purpose of Review: Patient engagement in research is increasingly recognized as an important component of the research
process and may facilitate translation of research findings. To heighten awareness on this important topic, this review
presents opportunities and challenges of patient engagement in research, drawing on specific examples from 4 areas of
Canadian kidney research conducted by New Investigators in the Kidney Research Scientist Core Education and National
Training (KRESCENT) Program.
Sources of Information: Research expertise, published reports, peer-reviewed articles, and research funding body
websites.
Methods: In this review, the definition, purpose, and potential benefits of patient engagement in research are discussed.
Approaches toward patient engagement that may help with translation and uptake of research findings into clinical practice
are highlighted. Opportunities and challenges of patient engagement are presented in both basic science and clinical research
with the following examples of kidney research: (1) precision care in focal and segmental glomerulosclerosis, (2) systems
biology approaches to improve management of chronic kidney disease and enhance kidney graft survival, (3) reducing the
incidence of suboptimal dialysis initiation, and (4) use of patient-reported outcome measures (PROMs) and patient-reported
experience measures (PREMs) in kidney practice.
Key Findings: Clinical research affords more obvious opportunities for patient engagement. The most obvious step at
which to engage patients is in the setting of research priorities. Engagement at all stages of the research cycle may prove to be
more challenging, and requires a detailed plan, along with funds and infrastructure to ensure that it is not merely tokenistic.
Basic science research is several steps removed from the clinical application and involves complex scientific concepts, which
makes patient engagement inherently more difficult.
Limitations: This is a narrative review of the literature that has been partly influenced by the perspectives and experiences
of the authors and focuses on research conducted by the authors. The evidence base to support the suggested benefits of
patient engagement in research is currently limited.
Implications: The formal incorporation of patients’ priorities, perspectives, and experiences is now recognized as a key
component of the research process. If patients and researchers are able to effectively work together, this could enhance
research quality and efficiency. To effectively engage patients, proper infrastructure and dedicated funding are needed. Going
forward, a rigorous evaluation of patient engagement strategies and their effectiveness will be needed. -
- Date created
- 2017-08-22
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- Type of Item
- Article (Published)