Understanding knowledge translation

In a quest to ensure science is useful, much attention has been paid to strategies to bridge the gap between knowledge and action. Putting knowledge to use (or into ‘action’) is a process that goes by many names. While McKibbon and colleagues [13] found over 100 terms for the process (e.g. implementation science, research utilization), in Canadian health research it is referred to as Knowledge Translation (KT). The knowledge journey can be conceptualized by the Knowledge to Action Framework (‘the KTA Framework’) [14, 15]. The framework recognizes two distinct but equal components: Knowledge Creation (knowledge inquiry, synthesis and the creation of products or tools) and the Action Cycle (activities leading to the implementation or application of knowledge). Ideally, both components occur simultaneously, with a give-and-take throughout the research process. However, comprehensive application of the KTA Framework is rare [16]. Most often, knowledge is pushed out into the public domain after the research is completed and knowledge-users are left to piece together its meaning, importance and potential application.

Over the last decade there has been increasing criticism of the end-of-grant approach, both in Canadian health research [17–19] and beyond [20]. Drawing on the experiences and theoretical constructs of the participatory research literature [21] and recognition of the importance of incorporating lay perspectives to tackle contemporary health problems [22–24], Canadian health researchers [14, 25, 26] and the Canadian Institutes of Health Research [7, 27, 28] have begun advocating strongly for and supporting a more inclusive, knowledge-user driven research agenda. In contrast to end-of-grant KT, the involvement of knowledge-users through the entire research journey is referred to as Integrated Knowledge Translation (IKT) [7, 21]. In IKT, knowledge-users are present at every stage of the research and are crucial, central and equal contributors. With tremendous potential to be much more complex than traditional forms of research, the IKT model is appealing to researchers and knowledge-users for the promise that researchers will tackle scientific questions with relevance to knowledge-user needs, have a fresh perspective to conduct their analysis and ultimately have an engaged, knowledgeable and ready audience to disseminate results [25, 26]. That is, having users drive the research agenda is one of the best predictors of seeing findings applied [29].

Despite the potential advantages an IKT model, examples of IKT in biomedical research studies are scarce. Instead, studies that engage with knowledge-users tend to only do this at specific points of the research (e.g. either to help with participant recruitment or to disseminate findings after the research is complete) and have a clinical or public health focus [9, 16]. There are few examples in the literature in which true knowledge-users (not simply other health care personnel) are engaged in a biomedical study throughout the entire research journey.

While IKT-specific research is at a “nascent” stage [21] we can draw on the lessons and insights from other initiatives in the co-production of knowledge, specifically noting that others have found that knowledge-users can contribute to research at many stages along the knowledge journey and their contribution can vary widely. Ross and colleagues [30], for example, found that health system managers’ involvement in research could range from formal (not informed about or actively involved in the research process, only provides legitimacy for the research) to responsive (responds to researchers efforts to engage, provides ideas and tactical advice, helps with data collection, results interpretation and knowledge dissemination) to integral (engaged as significant partner, helps shape research process and outcome, research conceptualization, formulation and execution of knowledge transfer strategies). The degree of knowledge-user integration into research has similarly been explored by others, such as Arnstein’s ladder of citizen power [31] or Tritter and McCallum’s more nuanced model that acknowledges diversity in knowledge contributions [32]. Oliver and colleagues [20] provide a framework for public involvement in research that not only addresses the degree to which the knowledge-user is involved (in this case termed ‘consultation, collaboration and lay control’) but also the context to that involvement. That is, are they involved as individuals or as members of organized groups and is it at the invitation of the research programme or in response to action by the lay public?

Ideally, knowledge-users involved in an IKT project should find themselves at the more integrated end of the various spectrums or ladders described above. Yet we know that knowledge-user involvement in research is not without obstacles. Many have described knowledge-users and scientists as coming from two separate vantage points with little common ground and even less common language. The suggestion is that integration of these communities is an unnatural fit and cooperative efforts are formidable [33, 34]. For instance, a feeling of ‘tokenism,’ or the belief by scientists that knowledge-users cannot understand or are not interested in the actual research, can decrease scientist’s willingness to draw on and engage with their partners [35]. Even with all parties fully engaged and willing to participate, different goals and expectations of project outcomes can undermine cooperative tasks [36–38]. Gagliardi et al. [38] note that knowledge-users’ lack of skill or understanding of IKT and poor attitudes towards the research scientists remain significant barriers in IKT studies published to date. Moreover, the very nature of basic or “discovery” research may be harder for knowledge-users to participate in due to its focus on ‘hard’ science and lack of touch points for ‘real’ people [37].

It is in this context that GET-FACTS was designed and implemented within an IKT model. Noting the potential for challenges in engaging knowledge-users in the research journey and yet simultaneously having few concrete examples of IKT within a large-scale biomedical study, we sought to explore the perceptions and experiences of the GET-FACTS knowledge-users, herein referred to as steering committee members, early on this knowledge journey. While we are studying all the GET-FACTS participants (both scientists and steering committee members; a similar investigation of the research scientists is the subject of a campaign paper), this study focuses on knowledge-users, exploring the steering committee’s perceptions of participation at year 2 of 5 in the GET-FACTS IKT project.

The GET-FACTS project

GET-FACTS is a five-year biomedical research project funded by the Canadian national health granting council. This program of research, led by a coalition of researchers from nine universities across Canada, is designed to investigate food allergy origins, causes and treatment. GET-FACTS is relatively unique among Canadian biomedical research studies in that the KT component functions equally and simultaneously with the core biomedical research right from the initial stages. Of the four pillars of research, a knowledge-user driven research agenda through IKT stands equal to research on genetic determinants of food allergy and tolerance, environmental impact on functional and immunological tolerance to foods, and novel biomarkers to assess allergy and tolerance.

A key element to the KT component is the establishment of an knowledge-user steering committee used to identify issues and help prioritize the research agenda as well as identify the KT opportunities and potential outcomes associated with the project. As the GET-FACTS proposal was originally being formed, 9 representatives from Canadian food allergy policy and advocacy were invited to join the committee based on prior strong relationship with the researchers through related research activities, 6 of whom confirmed and participated in drafting the proposal. Representatives were envisioned to provide the perspectives and priorities of their organizations on food allergy in Canada and contribute individual experience and insight where applicable. After the proposal was successful, the KT lead reached out again to representatives to confirm their participation. The top priority of the initial steering committee meeting in March 2014 was to determine other representatives that should be at the table.

One of the primary deliverables of the steering committee over the first 18 months was the development of a Terms of References to guide the functions of the committee and to formalize the project deliverables. Using a consensus decision making model, the group ultimately decided that the steering committee should consist of a maximum of 20 individuals, broken down to 1) a maximum of 5 representatives from the GET-FACTS scientists (both biomedical scientists and social scientists), a maximum of 5 representatives from the policy realm (federal, provincial and municipal/local/regional level governance), and a maximum of 10 representatives from patient oriented and not for profit organizations. The Terms of Reference also notes that members are invited to be a part of the steering committee based on their affiliation with relevant groups/research organizations and in the event that the member must leave the steering committee, another person from that organization will be invited to fill their seat at the table. Under the general principle of keeping the committee comprehensive yet manageable in size, new members can be proposed to the steering committee by any member in good standing at any time with relevant documentation and justification. Any proposed membership will be taken to the full steering committee for affirmation.

Together, members of the steering committee represent a variety of faces of ‘knowledge-users’. For example, members from patient advocacy groups speak to the rest of the committee about how they use research findings and the challenges their organizations face trying to interpret and decode newly published research when the public is contacting them for guidance. These members also speak from personal experiences as parents of children with food allergy. As well, the biomedical GET-FACTS scientist on the committee speaks both as a primary researcher and a practicing physician, and one of the patient advocacy representatives speaks both for her organization and based on her perspective as a practicing dietician.

The steering committee meets in person once or twice annually, with the GET-FACTS researchers as a whole and exclusively as a steering committee, and remains in contact through email exchanges and teleconference calls. The overarching vision of GET-FACTS is to have the steering committee meet regularly with scientists from all research projects under the GET-FACTS umbrella and freely exchange questions and ideas. With this, the steering committee can ask questions, spark research ideas and act as a sounding board for scientists along the knowledge creation journey. While steering committee members have pledged to keep all emerging scientific findings confidential until they are published, their time spent on the committee can help them to communicate back to their organizations the current state of scientific knowledge on food allergies and provide a more comprehensive interpretation of emerging scientific studies. Working alongside the science creation, steering committee members may, in theory, develop a better grasp of the science and later be called upon as a quality source for knowledge dissemination.

At the time of data collection the steering committee had two significant meetings with the GET-FACTS scientists. The first at the inaugural meeting in March 2014 was with the GET-FACTS Principle Investigator, who provided an overview of the entire project, the state of knowledge on food allergy and spent much time interacting with steering committee members to answer any of their questions and to explore potential roles the committee could play in the research going forward. The second major interaction with the scientists occurred October 2014 at the project’s annual meeting. All the theme leads came to the steering committee meeting, presented to the committee an in-depth overview of the science informing their work and provided an update on the state of the project and challenges they were facing. These interactions provided a venue for discussions not normally had between scientist and knowledge-user (for example, why does the analysis of genetic data take so long?).

All members of GET-FACTS (both steering committee and research scientists) have agreed to participate regularly to participate in IKT and to reflect on their IKT experiences. Steering committee members complete feed-back forms after every in-person meeting and both scientists and steering committee members are interviewed by the KT leads regularly through the life of the project. Amongst many advantages, these methods provide the KT arm regular feedback and the opportunity to shift direction when and if necessary, given the exploratory nature of this initiative. For the GET-FACTS IKT model to be successful, all members must be engaged and willing to participate. One of the salient questions going into this research was: how prepared and receptive are steering committee members to bridge the worlds between knowledge-users and research science?

Analysis

Audio files were transcribed verbatim and, after a thorough review of the literature, a thematic analysis ensued. A thematic analysis is the search for notable “themes” which are important for describing the phenomenon in question and involves reviewing data to explore both the research goals and any emergent issues. This method allows for pattern recognition within the data, which is carefully read and re-read throughout the process [39, 40]. Pattern recognition in our study occurred both deductively (based on the research objectives and interview guides) and inductively (themes emerging from the interview transcripts) [40].

The first author, who conducted all interviews, reviewed all transcripts and from this created an initial thematic set of codes to identify relevant data, broadly sorted into themes and sub-themes [41]. This initial set was then used independently by the first and second authors for a detailed review and pilot coding of three randomly selected transcripts. The authors then met to discuss their coding and noted any differences or missing codes. The code set was amended to these changes and using QSR International’s NVivo for Mac 10.2 the theme code set was then used to code all the transcripts. To enhance consistency and reliability, the first author led all steps of the coding and analysis process and the second author provided feedback and participated in interpretation of the findings [42].

Participant backgrounds

Participants in this study represent a varied array of experience with research and research studies. Four out of the nine members of the GET-FACTS steering committee hold a PhD in the social sciences; one member is a Registered Dietician; and all members hold senior positions within their respective organizations. Every participant reported that accessing current scientific information was important to the work of his or her organization. While seven participants had personally been involved in a research project prior to GET-FACTS, all nine reported that their organizations had previously contributed, in some form, to conducting research. This involvement was cursory for some (for example helping researchers re-work questionnaires so that the language was understandable by their research participants) while others (notably the public health organizations) contributed to designing and conducting research as part of their mandate. All nine participants reported that KT was a central component to the work of their organization.

Participant perspectives on knowledge translation

However, while there was general agreement that knowledge translation meant engaging with knowledge-users, only two of these participants explicitly stated that the research should then be guided by the knowledge-user needs.

Thus, participants made a link between the successes of the KT to the engagement of multiple actors in a variety of roles.

Thus, these participants expressed that while scientists support KT, it is lower on the priority list and fails to materialize.

GET-FACTS model of IKT

At the time of the interviews, the GET-FACTS steering committee had been active for approximately 13 months, though some individual participants joined after that point. After this year of activity, participants were asked to reflect on the GET-FACTS steering committee IKT model, which was followed by probing for both perceived strengths and challenges going forward. One sentiment was strongly echoed by all participants: it is a model that other research projects need to be adopting. As participant 004 notes, “as a model, it’s where we need to go.”

This participant speaks to the potential “power” of the model, and the hope that it will be able to shape scientists’ work through each step of research and dissemination.

The steering committee may also have to confront members’ own biases (3 participants, 3 mentions), especially if some of the results emerging from GET-FACTS were not to the member’s/organization’s liking (3 participants, 4 mentions).

Other potential challenges related to the relationship between steering committee members and the GET-FACTS scientists. Some suggested that the greatest challenge would be overcoming the knowledge gap that exists between stakeholders and scientists (3 participants, 6 mentions). This related strongly to another noted challenge; after a year of existence, some steering committee members still did not feel knowledgeable or connected to the GET-FACTS science (3 participants, 3 mentions), expressing a need for more regular touch points with the science and with the scientists.