Advancing patient engagement: youth and family participation in health research communities of practice

Abstract

Plain english summary: The involvement of patients in health research has resulted in the development of more effective interventions and policies in healthcare that respond to the needs of healthcare users. This article examines how working with youth and their families as co-researchers in health research communities of practice (CoPs), rather than just as participants, can benefit all involved. Health research (CoPs) promote an environment in which co-researchers have the opportunity to do more than just participate in the data collection phase of the research process. As co-researchers, youth and their families are able to participate, learn, and contribute to knowledge and building relationships that are designed to innovate and improve healthcare systems. However, in order to ensure engagement of youth and their families in health research that they find meaningful and rewarding, three factors have been identified as important parts of the process: promoting identity, building capacity, and encouraging leadership skills.

Abstract: Background Patient engagement in health research is becoming more popular as it can lead to evidence for developing the most effective interventions, policy and practice recommendations. Models of patient engagement have been evolving over the past four decades including health research communities of practice (CoPs). Health research CoPs help to break down professional barriers and enhance knowledge sharing for the purpose of improving health outcomes. In this article we consider health research CoPs when youth and their families are involved. Main body As part of an ongoing research program, we identify how insights about youth and their families' views are taken into account as well as their specific roles in health research CoPs. We have worked with youth and their families not only as participants in health research, but instead as co-researchers in health research CoPs. As co-researchers, youth and their families are able to participate, learn, and contribute to knowledge and building relationships that are designed to innovate and improve healthcare systems. Promoting and creating the space for identity, capacity building, and leadership is integral to the engagement of youth and their families in health research in a way that they consider meaningful and rewarding. Conclusions Youth and families can play stronger and more meaningful roles in health research by adopting a CoPs approach. Further examination of the internal structures and connections between youth and families as well other actors (i.e., with service providers and special knowledge holders) within emerging health research CoPs would be advantageous for developing greater understanding and best practices around engaging youth and families in health research.

Keywords: Participation in health research; Patient engagement; Research communities of practice; Youth and families.

Fig. 1

Youth and families play stronger and more meaningful roles in health research CoPs (left) through Youth and Family Advisory Councils (YACs/FACs), which in turn makes health research CoPs more connected and robust (right)