What is patient engagement?
Traditionally, patient contributions in research and research-related activities have been restricted to the role of research participant. For example, in clinical trials, research participants receive the treatment being investigated or receive a placebo (or alternate treatment). The voluntary participation of research participants in this way is a vital contribution to science, as these participants help researchers determine whether their treatment or health intervention works in the way it is intended.
Patient engagement, however, is about meaningful collaboration. Patients become patient partners in the project and can be actively engaged in governance, priority setting, developing the research questions, and even performing certain parts of the research itself. This type of participation helps to ensure that the research being conducted is relevant and valuable to the patients that it affects. Patient partners can also collaborate with the research team to summarize or share the results with target audiences (especially other patients) and with policy makers or other decision makers who may apply the results in a health or community setting.
Patient engagement in SPOR
A central tenet of SPOR is to put patients first—meaning that the patients themselves (and their families) are at the centre of the discussion on health. The idea is for patients, researchers, health care providers and decision makers to actively collaborate to build a sustainable, accessible, and equitable health care system to bring about positive changes in the health of people living in Canada. Engaging patients is thus an integral component in the development and implementation of all elements of SPOR, including the SUPPORT Units and research networks.
For more information about the full scope of patient engagement in SPOR, please see the Patient Engagement Framework. It was designed specifically to establish key concepts, principles, and areas for patient engagement to be adopted by all SPOR partners.
- SPOR Patient Engagement Framework
- Considerations when paying patient partners in research
- CIHR Jargon Buster
- SPOR in action
- Patient Stories in Health Research – Colleen McGavin
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