“It is important to partner with patients and caregivers when designing this type of research, to ensure the outcomes that are important to them are captured.”- Dr. Shelley VanderhoutResearchers are increasingly conducting studies which are informed by patients, or focus on outcomes that are important to patients, such as symptoms, care experience, and quality of life. This helps ensure that the research is relevant to patients, making it more likely to improve care, and researchers at The Ottawa Hospital are leading the way in these emerging practices.
A study published in PLOS Medicine found that worldwide, many pragmatic clinical trials are considering patient perspectives, but there is room to improve. When the researchers looked at 415 pragmatic trials published between January 2014 and April 2019, they found that only half measured patient-reported outcomes as a primary or secondary focus.
They also found that only 9 percent of the studies included patient engagement, where researchers and patients work together to design or conduct a research project. Trials conducted in Europe more commonly measured patient-reported outcomes, while trials involving young children or the elderly and those that recruited patients in low- and middle-income countries were less likely to measure patient-reported outcomes.
“It is important to partner with patients and caregivers when designing this type of research, to ensure the outcomes that are important to them are captured.”- Dr. Shelley Vanderhout, postdoctoral fellow at The Ottawa Hospital and professor at the University of Ottawa
Learn how OHRI’s Office for Patient Engagement in Research Activities (OPERA) can help make your next project more relevant to patients.
Authors: Shelley Vanderhout, Dean A. Fergusson, Jonathan A. Cook, Monica Taljaard
Funding: There was no dedicated funding for this study. All research at The Ottawa Hospital is enabled by generous donors to The Ottawa Hospital Foundation.
The Ottawa Hospital is a leading academic health, research and learning hospital proudly affiliated with the University of Ottawa.
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