Results are organized around three sections: participant backgrounds and previous experiences, perceptions regarding KT and reflections on the GET-FACTS model of IKT. Each theme is discussed in turn below, with key findings punctuated by participants’ voices through anonymous quotations.
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
All participants had heard of and used the term “Knowledge Translation” prior to its discussion in the interview. When participants were asked what KT meant to them, the most frequent response (7 participants, 10 mentions) emphasized making information useable to the knowledge-user. That is, not just presenting the information, but tailoring it with the needs of the knowledge-user in mind:
You really try to be careful about the difference between, say, knowledge exchange and [KT]. Exchange is finding ways to share that [information], but translation is actually finding a way to put it into terms and in a context that means it will be used. (Participant 004)
Participants also emphasized that decoding language and making it understandable to knowledge-users was an important aspect of KT (6 participants, 9 mentions). In the context of their work with food allergy this would mean taking scientific jargon and repackaging it in “everyday” language so that the public could make use of it.
… it’s almost like you’re taking one language and translating it into a different language; the language being science and the translation ending in common and useful terms. (Participant 005)
Participant 004 humorously referred to this aspect of KT as “the quest to find the secret decoder ring” in order to act as a broker of KT; to illustrate:
The problem is scientists are so specialized they don’t know how to speak broadly sometimes. [KT] means overcoming that. So I started researching what the medical terms and everything else meant, and [eventually] I thought, okay, I think I get what she’s saying. But I had to wade deep into that science jargon. It took me a month of writing out notes, figuring out what all these long words meant. But this scientist really believed in her work, so I told myself… I have to figure out how to tell people why this is a good thing. (Participant 001)
Two thirds of participants (6 participants, 8 mentions) described aspects of IKT when asked to define KT. That is, engaging with knowledge-user groups before and during the data collection was a vital component of KT:
It means engaging with all relevant stakeholders to better understand the context surrounding a situation. To understand the knowledge and evidence that’s available, processes that are used to make decisions, the potential gaps, how gaps could be filled, what evidence is missing. It’s trying to get a better sense of the entire situation, where the gaps are and how the gaps can be filled. (Participant 007)
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.
Many of the participants noted that while they understood the concept of KT, the term “Knowledge Translation” was not what they would use on a regular basis. Four participants said their organization used another term such as ‘knowledge mobilization’ to denote the same concept. Two members of the committee also pointed out the ambiguity of terms such as “Knowledge Translation”. They argued that the ‘siloed’ usage of different terms to convey the same or similar ideas could create more confusion and decrease the exchange of ideas across disciplines. Both of these participants also said that a focus on ambiguous and specialized terms, such as KT, actually created a barrier to the public from engaging with the information, ironically the opposite of what KT is supposed to do:
We don’t really use [the term] [KT], we like to call it the ‘science policy interface’. It’s easy to get caught up in terminology… I find that in common day language and talking to people, they don’t really quite understand it and usually have to ask ‘what does that really mean’? (Participant 006)
When asked what groups they thought should be responsible for conducting KT, participants pointed to a variety of actors. Most frequently cited were policy makers and/or the government (8 participants, 10 mentions) and scientists/researchers (8 participants, 10 mentions). Seven participants (9 mentions) suggested that it was the responsibility of stakeholder groups to conduct KT. Others mentioned with much less frequency included industry (2 participants), public health units (1 participant, 1 mention), health professionals (1 participant, 1 mention) and the public (1 participant, 1 mention). Two-thirds (6 participants, 12 mentions) of participants explicitly argued that KT was a shared responsibility amongst the different actors mentioned above. One participant reflects:
I think if it’s seen as a collective responsibility and is adhered to in a process through the acceptance of multiple participants, then we’ll have a better outcome, I’m sure. (Participant 002)
Thus, participants made a link between the successes of the KT to the engagement of multiple actors in a variety of roles.
Participants also spoke to their impressions of scientists’ engagement with KT activities. While two participants said that they had not had enough contact with scientists to be able to comment, four of the nine participants (8 mentions) said that, broadly, their sense was scientists were not excited or engaged with KT activities:
My experience has been that scientists feel it’s not their responsibility; they just want to be able to do the research that they do. (Participant 002)
Three participants noted that there was a large variability in “scientists” when reflecting on this, and while some are very engaged, others are not. Two participants (2 mentions) pointed out that there are many scientists that would like to become more involved in KT activities, but they face large obstacles in making that happen; the demands of conducting research and publishing consume most of their time and are the priorities of their research institutions:
From what I’ve seen, they’re all fully in favour of it and want their knowledge to get out there but are pretty entrenched and focused in their research world and can’t do it all. (Participant 006)
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.”
Four of the participants (4 mentions) expressed that they viewed the GET-FACTS IKT model as a definitive and distinctive change to the way research has traditionally been conducted:
I think if the model plays out, it could be really powerful… if we can really find a way to positively influence the way work is done, even the way that things are published and things like that, just by getting scientists to think about the end-users all the way through. I think we can really improve their ability to be full serve. Their ability to conceive of and do the research and analyze the findings… (Participant 004)
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.
Over half of those interviewed (5 participants, 7 mentions) expressed the sentiment that it was “too early” to be able to comment on the GET-FACTS IKT model. These participants said that they were still figuring out how the model would work and that the project was still evolving:
I think for me, it’s too early for me to say. I’m still getting a feel for some of this, as we go along. So, I’m not quite sure yet. (Participant 003)
Therefore, they said, it was too early to speculate on the model’s connection to the research scientists or knowledge-users:
Whether [the steering committee’s contributions are] being communicated to the scientific research group, or whether or not they are having or will have any impact on the scientists and getting the research out to the in the real world, the kids and their families… I have no idea if that’s happening, and I think it’s kind of too early at this point for it to have happened. (Participant 009)
All participants spoke generally of advantages in approaching research in the manner of GET-FACTS. The most commonly suggested strength of the GET-FACTS IKT model was that it could increase the quality and accuracy of knowledge dissemination (7 participants, 7 mentions). Six participants (6 mentions) noted that it could potentially teach scientists how to communicate with lay audiences, a benefit that would ripple beyond the immediate study into scientists’ future projects and other realms of work. As one participant notes, by having scientists talk about their research with non-scientists they will grow to be better communicators:
I think it makes them more comfortable with the lay-person, who is not in their field. Because if they only talk to people in their field they get away with jargons and acronyms because everybody has the same base of knowledge, right? Whereas a lay-person might not. (Participant 001)
Others saw another advantage of the model being the capacity to encourage scientists to focus on topics relevant to knowledge-users (5 participants, 6 mentions). For example, one participant proposed that scientists should be aware of the population statistics that patient advocacy groups are greatly in need of, and could potentially frame future research to address these gaps. Further, when research focuses on topics knowledge-users are concerned about, scientists’ efforts become more valuable:
I think it’s a win-win for everyone. I think that scientists will be able to do a little less wheel spinning and maybe target more on areas that are of major concern. (Participant 003)
This finding parallels another suggested benefit; the research stemming from this model will be more readily used by knowledge-users (3 participants, 3 mentions):
Rather than [going] the more traditional model where the researcher just comes up with their research question and their theory, and then they come up with research that may or may not be useful… it’s another research paper to add to the pile with possibly mediocre design and irrelevant statistics and nothing that really changes anything. It’s almost like a make-work project. If you go the other way around and you say, okay we want to improve the life of an allergic kid, [we can ask:] ‘what are the things that are affecting his or her health and the parents’ ability to cope?’ And so [when we] work backwards the advocacy piece will be stronger because you’re having research that’s directly linked to the issues that the child is facing and then it trickles down to the governmental level. The government will then be in a position to provide information that can allow groups to advocate more effectively for the patient. (Participant 005)
Participants suggested that the GET-FACTS IKT model would provide stakeholders with a greater appreciation and understanding of the research behind the findings (2 participants, 2 mentions), while simultaneously providing scientists with a fresh perspective and ignite new ideas towards the research (4 participant, 4 mentions):
Sometimes it can even spark different ideas. I really think it’s a win-win situation for everyone involved in the sense of just getting a better understanding of the science, the practise and how each can inform each other. (Participant 007)
Yet, the participants were also very candid that there were potential challenges the GET-FACTS IKT model may have to confront. Many of the challenges participants suggested involved the dynamics of the steering committee. For instance, many said it would be challenging keeping all members of the steering committee motivated and engaged (including “managing expectations”) (5 participants, 6 mentions) and keeping the steering committee and its meetings organized and focused (5 participants, 6 mentions):
[The greatest challenge will] involve the steering committee. What are some ways to keep them engaged and motivated? [We will have] to provide some evidence that what we’re doing and what we’re contributing is influencing the science and evidence. […] Providing some concrete examples of how the outcomes of the meetings or other mechanisms were directly heard. (Participant 007)I think [the challenges could be] keeping folks clear on what the focus is and what the limitations of the expectations of the contribution are… (Participant 002)
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.
When participants were asked to reflect on what in five years “success” or “failure” would look like for the project, a clear pattern emerged. Most participants felt that the success or failure of the GET-FACTS project extended beyond its contributions to food allergy knowledge, though this too was important. Success would be a concrete resource for others to draw on (such as a publication or conference) (5 participants, 6 mentions) and the replication of the model in future research projects (7 participants, 10 mentions). Conversely, participants said failure would be if the GET-FACTS IKT model was not made available for other researchers to learn from (6 participants, 10 mentions) and if the GET-FACTS approach did not influence the conduct of future research projects (7 participants, 7 mentions):
Failure would be that we all agree that this has been interesting and we can point to some things that we’ve done, and then we all go back to doing things the way we always did them. (Participant 005)
Participants also expressed that the success or failure of the project related to its contribution to the food allergy knowledge-users. Four participants (4 mentions) expressed success as being a higher quality of life for knowledge-users, such as children with food allergy and their families. Others said success would be an increased amount of information on food allergy made available to the public (3 participants, 3 mentions) and a general increase in the public’s awareness about food allergy (3 participants, 3 mentions). On the other hand, participants said that failure would be if there was no measureable impact from the steering committee (9 participants, 9 mentions), the scientific information from the GET-FACTS project is not well disseminated and is never received by knowledge-users (5 participants, 5 mentions) or if there is a lack of accuracy or credibility in the information that emerges from the project (1 participant, 1 mention). Participants reported (8 participants, 13 mentions) that measuring this impact would be very important for the project to gauge its contribution:
How do we measure change? How do we know whether people’s awareness has increased, whether their behaviour differs and, most importantly, has their empathy towards food allergy changed? (Participant 002)