Table 1 Concepts for knowledge user engagement in health research

Researcher: prepare, support

Initiate/support researcher capacity/behaviour for power sharing, expertise, engagement - includes language and knowledge differences, learning (e.g. attending meetings with community groups, volunteering, and working with groups to understand knowledge user perspectives).

For example, James et al. (2011) describe how researchers were integrated into the community to learn more about community, the expertise that community members bring to research, and impacts on health disparities [28].

Knowledge user: prepare, support

Initiate/support knowledge user/community organizational capacity/behaviour for power sharing, expertise, engagement (e.g. develop resource manual, provide training in research methods).

Johnson et al. (2016) describe a study about breast cancer and how the researchers worked to prepare patients in advance of the study, so that patients felt confident in their role [29].

Relational process

Initiate and/or sustain a relational process (relationship building) between knowledge user-researcher to promote respect, reciprocity, trust and partnership synergy.

Jinks et al. (2016) conclude that inclusion of patients and the public through governance and operational levels of the research creates a culture that partnership with patients and public are an essential feature of research [30].

Research agenda

Engage in a process to define study agenda: scope, priorities, objective(s).

Dickert and Sugarman (2005) describe the inclusion of communities in planning the conduct of studies as contributing to the ethical goals of research [31].

Ethics: principles/values

Conduct knowledge user-researcher partnership work in an ethical way demonstrated by reflection on ethical concepts, and/or concern with particular values and research conducted in ways reported as meaningful, respectful, inclusive of those in the research partnership. Evidence of principled (versus policy, rules) research conduct.

In the conceptualization of implementation partnerships, Hunt et al. (2012) identify respect for community values as one of 12 guiding principles [32].

Research questions

Define research questions to identify what, specifically, the research project aims to achieve to justify the need to conduct the research (i.e. how/why was this topic chosen? What gap will it fill?).

A National Institute for Health Research (2015) reports on how working with service-user researchers in designing studies is important to keep research questions focused on concerns of those who will ultimately benefit from the research [33].

Resources

Develop funding applications/grant proposals for and/or to obtain resources (e.g. funding, time) to support knowledge user-researcher engagement.

As part of incorporating culture and diversity into translational research, Graham et al. (2016) discuss the importance of culturally specific implementation resources [34].

Ethics: policy/rules

Conduct knowledge user-research partnership work in an ethical way demonstrated by participation in an ethical application development (e.g. writing consent forms et cetera), review (e.g. research ethics board, community review) and/or development and/or use of an ethical framework (e.g. knowledge user role in the use of particular protocols, processes).

Jull et al. (2016) describe how the ethical guidance was adhered to and used to guide the conduct of the study to ensure that ethical obligations to research participants and the broader community were met and goals of the study achieved [35].

Methodology

Decide on the research methodology (approach) or report process to justify the use of the proposed methodology.

Fagan et al. (2016) describe the result of collaboration/ dialogue between the investigator and patient and family advisors about methodology as exploration of how to produce valid research and understand the potential impacts on the patient [36].

Methods

Decide upon research methods and a justification for the use of the proposed methods; selection of outcome measures.

Heaven et al. (2016) report on a study examining frailty, and how community members who were members of the study partnership were included in a process of decisions about study methods [10].

Collect data

Collect data and includes tool development.

In a study about engagement of families of children with serious acute illness, Sauers-Ford et al. (2016) describe using family feedback to adjust tools used in the collection of data [37].

Analysis

Decide about the analysis and interpretation of data (e.g. what form of analysis and how will be conducted).

In a study aimed at addressing disparities in asthma outcomes, Shelef et al. (2016) report on how preliminary analysis of the data was discussed in depth with the stakeholder engagement and national advisory core groups, and findings used to inform next steps of the study [38].

Disseminate

Identify the appropriate audience to disseminate the research findings and tailoring the message and medium to the audience to create tangible products (e.g. publication of findings, community meetings, et cetera).

Woolf et al. (2015) describe processes of engagement with the community in health equity research and that led to, among other outcomes, dissemination of findings at community meetings and newsletters [39].

Evaluate

Evaluate the research study processes.

Deverka et al. (2013) describe the evaluation of community based participatory research processes as a feature of their framework to define stakeholder engagement in comparative effectiveness research [40] .

Sustain

Maintain study benefits at a certain rate, level. That is, make deliberate efforts to sustain study intervention(s).

In describing strategies for academic and clinician engagement in community-participatory partnered research, Jones and Wells (2007) identify the support of sustainable leadership [41].