What can patients contribute and why it is needed?
If patient-oriented research is intended to focus on priorities that are important to patients and produce information that is truly taken up and used to improve health care practice, therapies and policies, a strong foundation for ensuring successful collaboration must be laid.
The Canadian vision:
“Patients are active partners in health research that will lead to improved health outcomes and an enhanced health care system.”
Patients bring the perspective as “experts” from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the health care system. Involvement of patients in research increases its quality and, as health care providers utilize research evidence in their practice, increases the quality of care. “Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results.”Footnote 1 By encouraging a diversity of patients to tell their stories, new themes may emerge to guide research. Patients gain many benefits through their involvement including increased confidence and master new skills, access to information they can understand and use, and a feeling of accomplishment from contributing to research relevant to their needs.
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