This research will create and test a measurement tool, the Patient Engagement in Research Scale (PEIRS). The PEIRS will assess patients’ perceptions of being meaningfully engaged as Patient Research Partners in health research. The practice of patient engagement in research is a change from the usual way of doing health research, and it is becoming increasingly valued and required. Patient engagement in research occurs when patients take a role in conducting tasks and making decisions in research governance and at any stage in the research process, from planning the research through to the dissemination, the use, and assessment of the use of the research findings. Patients who engage in research bring their important experiences of living with health issues and using health services. Their experiences can make the research more relevant to the needs of patients. Patient engagement is meaningful when the research process demonstrates certain values, such as mutual respect and co-building of knowledge, which benefits the patients, researchers, research funders.
Presently, there is no measurement tool to assess the extent to which patients are meaningfully engaged in research. To determine the best ways of engaging patients in research, the Patient Engagement in Research Scale (PEIRS) is needed to assess the success of different ways of engaging patients in research.