The last decade has shown a transition towards the inclusion of patients in important health care decision-making such as personal health decisions, health care delivery and policy-making, and the development of clinical practice guidelines. The next evolution of patient-centred medicine is to incorporate the meaningful engagement of patients into health care research as part of the research team.
Several countries have adopted the concept of patient engagement in research through public or non-profit initiatives, including the Patient-Centred Outcomes Research Institute (PCORI) in the USA, Strategy for Patient-Oriented Research (SPOR) in Canada, and INVOLVE in the UK. The underlying concept of all initiatives is the same; that research is carried out ‘with’ or ‘by’ members of the public with direct experience of a health issue rather than ‘to’, ‘about’ or ‘for’ them.
In an effort to stay ahead of the curve, the McMaster Centre for Transfusion Research has created a committee, known as the Patient Engagement Collaborative (PEC), to begin to incorporate patient engagement activities throughout projects and research occurring within the centre. Currently, a guide is being developed by the centre to aid researchers in incorporating patient engagement into current and future research projects.