Partnership with the patients and the public (PPP) in research

Involving patients in research

Traditionally, patients’ contribution to research has been that of a mostly passive role as participants, for example in clinical trials.¹

Voluntary participation in research is an essential contribution to science. This involvement helps research teams determine whether a treatment or an intervention works as intended. 

However, patients can be more active in research by collaborating directly with a research team. This is known as patient engagement or partnership.  

In this context, the participants become partners in the research project. They can play an active role in governance, in setting research priorities, in developing research questions, and even in carrying out certain parts of the research. 

Why is patient partnership important for research?

This type of participation promotes research that is relevant and useful to those affected. 

Patient partners can also work with the research team to popularize the results and communicate them to various audiences, as well as to policy-makers and other decision-makers. These can then apply the results in a health or community context. 

¹  The word patient is used here as a general term that includes all people living with a health condition or limitation. This also includes caregivers, friends and family. Source IRSC: http://www.cihr-irsc.gc.ca/f/48952.html#p.