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

There is growing awareness that patient engagement in health research is not only ethically important, but leads to evidence for developing the most effective interventions, policy and practice recommendations, and planning for ongoing research [1–3]. Models for patient engagement have been evolving over the past four decades, and research that is grounded within evolved forms of stakeholder participation is typically understood as research as practice. Recently, attention has been shifting towards new forms of interpretive communities known as communities of practice (CoPs) and their potential for developing greater knowledge around participation [4–7]. CoPs do not privilege research-based evidence over experience-rooted knowledge; therefore, they have the potential to become powerful “venues for bridging traditional rifts in the health sector between research and practice, and among disciplines” ([8], p.3). CoPs have been found to enhance the performance of interventions through breaking down professional, geographical and organizational barriers, enhancing knowledge sharing, and facilitating the implementation of new processes [9]. There are examples of CoPs that have been successfully assembled in healthcare settings, especially within oncology [8]. Furthermore, training on how to develop and maintain CoPs focused on improving health within different contexts is an important emerging area in the literature around patient support and participation [7]. However, it is not yet well documented how CoPs could influence the development of research for health systems and interventions for youth (i.e., children and adolescents) and their families. In this article we examine patient engagement beyond the traditional hierarchical structures for participation towards developing a greater and more functional understanding of how youth and families are involved through health research CoPs. We do so by exploring the participation of youth and families in health research CoPs created through IN•GAUGE®, an ongoing research program led and coordinated by Dr. Roberta Woodgate. Dr. Woodgate’s research engages youth, families and caregivers, service providers, researchers, and policy makers towards building insights into the lived experiences of youth with physical and mental illness.

Patient engagement has roots in several international agreements including the WHO Alma Ata Declaration (1978) in which declaration 10 states, “The people have a right and duty to participate individually and collectively in the planning and implementation of their own health care” [10]. Since the Alma Ata, this ethos has been applied with different patient populations, including children and adolescents. The most formal and largely recognized articulation of children’s rights to participate is Article 12.1 of the United Nations Convention on the Rights of the Child (UNCRC), which asserts that “States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child” [11].

A few models and typologies for participation run parallel with the UNCRC standards and have been applied to youth engagement in health research. Many of such models have roots in Arnstein’s “ladder of citizen participation” [12], which Hart later modified and contextualized as being relevant to young people’s participation [13]. Almost a decade later, Shier’s “pathways to participation” typology for children’s participation in decision-making significantly revised the format of the model to five levels operating as a continuum [14]. These frameworks for participation have significantly influenced how children are regarded within research communities. Stewart however, stresses that it is difficult to find a workable definition of participation, and the popularity of incoherent definitions in health research “belies fundamental uncertainties about what [participation] entails and its associated benefits” ([15], p. 124).

Towards overcoming uncertainties around hierarchical frameworks for decision-making, Turner argues that the conceptual frames provided in the growing literature around CoPs can provide a more comprehensive understanding of health research systems aiming to have an influence on practice [16]. Lave and Wenger contributed greatly to the concept of CoPs and focused on informal and situated interactions towards achieving a better understanding of learning that is grounded in practice [17]. Later, Wenger focused on the trajectories of participation, social identities, and the effects of participation within different communities; and developed a set of indicators for CoPs [4]. Wenger defines the three core components of CoPs as the domain, which refers to a “concern, set of problems, or passion about a topic”; the practice, representing the knowledge that the group shares and generates; and, the community, which is the set of interpersonal relationships that are the product of engaging in learning through practice [4]. Wegner, McDermott, and Snyder developed the definition of communities further as “Groups of people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise in this area by interacting on an ongoing basis” ([18], p.4). When the three elements function well, CoPs become structures that can take on the responsibility of developing and sharing knowledge [18]. le May expanded the CoPs framework to account for the outcomes and benefits of CoPs in health and social care, including knowledge sharing, learning, building social relationships, innovation, and improving organizations [19].

Research communities engaging in research as practice have been studied using the CoPs framework, which has been applied to a variety of contexts (e.g., incarceration, community development, health, and education) with adults and mixed-age populations. Yet, the process of engaging youth and their families in health research communities of practice CoPs is yet to be studied in a systematic way. Furthermore, major funding agencies (e.g., Canadian Institutes of Health Research) equate patient engagement with the adult model of participation and do not give special consideration to how research should be conducted with youth and their families. In the following section we identify how insights about youth and their families’ views are taken into account as well as their specific roles in health research CoPs that are created through IN•GAUGE®, a research program focussed on building knowledge through conducting research with youth and their families, rather than on them.

Turner asserts that framing health research within CoPs should first involve translating research findings into practical implications for organizations and identifying ways of developing and “communicating evidence from social science research that demonstrates its relevance to ‘real-world’ decision-making such that it has maximum impact on healthcare policy and Practice” ([16], p. 2). Towards achieving the important next step of understanding the roles and outcomes of youth involvement in health research CoPs it is essential to hear from the youth themselves. IN•GAUGE® creates health research CoPs through the implementation of participatory research agendas with co-researchers (we use this term instead of “participants” towards acknowledging the contributions made as well as the power that has been divested according to participatory action research principles). These health research CoPs emerged through both intentional planning as well as the organic development of a web of relationships that results from sustained engagement in an area of research, depending on the particular study. Through IN•GAUGE®, qualitative and arts-based methods (such as photovoice, computerized drawings, body mapping) are applied to help amplify the voices of youth and their families, as well as explore and share research findings from the youth- and family-centred health research program through accessible strategies (such as the development of films, websites and choreography). These strategies all worked to highlight the voices of young people and families with lived experience and to ensure that the best available evidence flowing from the research is in the hands of those who influence children’s health – parents, families, healthcare professionals, decisions makers and children and youth. In considering CoPs framework in relation to IN•GAUGE®, the health and well-being of youth with physical and mental illness and their families is the domain. The practice is the development of strategies for improving child and family health and well-being, and the community are the youth and families, service providers, researchers, and policy makers that are brought together into action through the common concern (i.e., the research question). Learning is promoted in IN•GAUGE® health research CoPs through participatory action research protocols involving knowledge brokering and various feedback cycles with youth and families, researchers, service providers, and special knowledge holders [6, 20]. For learning to happen within health research CoPs, individuals need to be willing to contribute to the evolution of collective learning through sharing information, developing, and implementing strategies and conducting evaluations [21, 22].

This interpretation mainly focused on the engagement of youth and families within health research CoPs through exploring their interactions with university researchers. This paper would have been strengthened by working with co-researchers in its development however time constraints for co-researchers and prior commitments to other knowledge translation activities by members of YACs made such an approach challenging, reflecting broader challenges of working in a participatory manner. Further examination of the internal structures and connections between the 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 how health research CoPs function as entire systems [30]. Further investigations into the structures of YACs and FACs would also be beneficial for understanding their impacts of health policy and practice [31].

The dearth of health literature focusing on patient engagement involves frameworks equating patients with adults, not recognizing that these approaches may not resonate with youth. Through exploring the outcomes of engaging youth and their families through IN•GAUGE®, a sixteen yearlong research program led by Dr. Roberta Woodgate that is focused on working with youth and their families across the spectrum of patient engagement, improving health research and practice, we have gleaned several important insights about the development of health research CoPs for health systems for youth and their families. Promoting and creating the space for identity, capacity building, and leadership is integral to the meaningful engagement of youth and their families in health research. Within such conscious spaces, co-researchers are able to participate, learn, build social capital, and contribute to knowledge and building relationships that are designed to innovate and improve healthcare systems.