RESUMEN
Patient engagement in research, a collaborative practice of including patients and families as active and respected partners in the research process, leads to improved quality of patient care and positively affects outcomes for patients and families. There is strong support for the benefits of patient engagement. What is less clear are the methods by which organizations can achieve authentic patient engagement in research and the ways a committee structure can support an institutional research engagement need beyond the individual investigators. In this report, we describe the mechanisms needed to support the implementation of a research-focused patient engagement strategy and lessons learned from the patient and family perspective.
Patient engagement in research is a way of working in partnership with patients and members of the public to plan, manage, design and carry out health research, leading to improved patient care. Extensive research has been published on the practices individual research teams can use to positively engage patients and families in research. A current gap in existing research is the methods health care organization can use to achieve authentic patient engagement. In this report, we describe the implementation of a research-focused patient engagement strategy and the lessons learned from the patients and families involved in developing the strategy.