A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation...

Area of Science:

• Health Services Research
• Patient-Oriented Research

Background:

• Traditional peer review is a closed process.
• Can-SOLVE CKD is a Canadian kidney research network.
• Patient-Oriented Research (POR) aims for integrated, patient-centered approaches.

Purpose of the Study:

• To establish a more integrated and patient-centered research approach.
• To implement a Research Operations Committee (ROC) with patient members.

Main Methods:

• The ROC includes patients, physicians, scientists, Indigenous partners, and methodology experts.
• Research teams submit annual review packages including patient engagement data, knowledge translation plans, and progress reports.
• The ROC evaluates submissions and provides feedback and recommendations.

Main Results:

• The transparent ROC process, feedback, and accountability system are well-received by patients and researchers.
• Over three years, there was an increase in patient leads per project.
• More researchers completed POR and cultural sensitivity training.

Conclusions:

• The ROC framework facilitates active patient contribution throughout the research process.
• This model can be adopted by other organizations to enhance patient-centered research.
• Formal evaluation mechanisms for this approach are currently lacking.