How to tell a story (of your research) to anyone – you are Batman

By Anneliese Poetz, KT Manager, Kids Brain Health Network

Almost two years ago I took a creative writing course. I didn’t expect at that time that it would be so relevant to Knowledge Translation, but I have come to realize that it really is.

I remember during graduate school, as researchers-in-training we were taught to be able to ‘tell the story’ in our data, meaning, how think analytically or be able to describe the patterns in your data.  Being able to tell the story that your data were telling you was necessary no matter whether it was a quantitative (statistical analysis of numerical data) project or qualitative (analysis of words, text).  But beyond this, when it comes time to tell the story of your research project as a whole, you need to become Batman.

“Becoming Batman” means you can think of yourself as the protagonist (see #4 below) in the story of your research project when you are developing your messaging for your KT products.  The KT Core recently produced an Infographic Guide. It requires the research team to sketch out the ‘story’ they want to tell about their research.  It occurred to me post-production that maybe some further pointers were needed for how to do that, and became the inspiration for this blog post.

Whenever we create KT products, it is usually the hope that it will inspire and inform changes; either in policy, practice or individual behaviours and attitudes.  In my creative writing class we were taught about ‘the poetics’ or the 4 ‘unities’ or ‘elements’ of any great story, no matter how it is told: in a book, a play, a movie, etc.  In each great (popular) story, all 4 elements are present.  These four elements and how they relate to telling a compelling story about your research that motivates people to take action are:

1)  Time: how much time is being covered in your story?  With respect to your research project, how long as the problem (see: #4 antagonist) under study been an issue?

You need a containable frame of time.  What was the time frame for your study?  Is there a timeline?

Was there a short timeline within which you had to solve this problem? What were the macro segments of time (the overall timeline from beginning to end) and what were the micro segments of time (time it took to interview respondents)?

You need to decide what will be the beginning of the story, and what will be the end. Make the time frame clear. Will you start to tell the story from before the project began, when you consulted with stakeholders to find out what they needed and formulated the research questions in order to figure out what the solutions could be?  Or will you start telling the story from when you successfully received a research grant to investigate your questions?  Is this something that occurred in the past? Over the past week? Over years? Are you telling the story in past tense or present tense?

Be aware of how much time (e.g. in a video) or space (in an infographic) you have to tell your story – if you only have a small amount of time or space, you are bound by that so keep the story within these constraints.  You can’t cover everything, and the amount of time or space will never be enough. But make a decision what you actually want to cover.

2)  Place:  In your story, where is your research taking place? Place is very important to the story, is it clearly defined or mentioned?  How has ‘place’ affected you and your role in the story of your research?  What are the people like?  How has it influenced who you are, how you do your work?  Make sure your interaction with ‘place’ is part of the story you are telling.

 

3)  Antagonist (villain): you can’t write a story without an antagonist, the antagonist is absolutely crucial to your story.  But in your research project you won’t be talking about how (you as) Batman defeated the Joker. An antagonist in a research project can be an illness, disease, societal issue you want to understand or solve, or a phenomenon (like a discovery you want to make).  Describe what your antagonist is.  What is the problem you are investigating?  Is your antagonist internal (you are struggling to overcome your own curiosity, your personal issues and/or health problems) or external (are you investigating a community or societal issue, an environmental plague, outer space, etc.)?  It should be readily apparent to the reader what it is you are up against.

How did you (or are you planning to) overcome it? This will be your research methods.

4)  Protagonist: The protagonist is the ‘hero’ or main character. This would be you, the researcher.  You are Batman.  You and your research team are working towards overcoming the ‘antagonist’ or problem you are investigating.

How are you different now at the end of the project than you were at the beginning? What did you learn? Discover?

You can’t have a little of both – it is absolute – you either overcome the antagonist or you succumb to it.  Did you overcome the antagonist (solve the problem you were investigating, make the discovery, answer your research questions) or did you succumb to it (the project did not yield results and further research is needed)? In storytelling this is known as the cathartic ‘release’, the recipient of your story is waiting to see whether it is going to be one or the other, and gets the same amount of pleasure out of the story whether you succeeded or failed. The reason why people are interested in your story is to find out what happened, to get that cathartic experience. In order to motivate the reader to action, you need to find a way to get that emotional reaction.

You have a fascinating research project. The trick is to be able to convey what’s important to you about your research, to someone else.  What is at stake for you? For society? Make sure the stakes are high enough, this makes the story more compelling.  What would happen if you hadn’t done this research project?

Food for thought for the next time you create an infographic (or really any KT product). What is the story you are telling? Does your ‘story’ evoke an emotional reaction? If the answer is yes, you will be more likely to motivate the reader toward action (e.g. changes in policy, practice, and/or personal behaviour) and isn’t that the reason why we do KT?

 

Stakeholder Engagement for Research Uptake / La participation des intervenants dans l’exploitation de la recherche

This week’s guest post comes from York University’s ResearchImpact Blog, MobilizeThis! It was first published on April 22, 2016 and is reposted here with permission. 

Source: Stakeholder Engagement for Research Uptake / La participation des intervenants dans l’exploitation de la recherche

by: David Phipps, KT Lead, NeuroDevNet

Last updated in 2013 (so not new, but new to me), DFID UK has produced a guide to aid in research uptake. This guide helps researchers work with stakeholders to maximize the opportunities for research to be taken up and used by organizations making new products, developing policies and/or delivering services. Using this guide will help facilitate stakeholder engagement to enable research uptake.

Le ministère du Développement international du Royaume-Uni, le DFID, a mis à jour en 2013 (pas franchement nouveau, mais pour moi, oui) un guide pour faciliter l’exploitation des travaux de recherche. Ce guide aide les chercheurs à collaborer avec les intervenants, dans le but de maximiser les occasions d’utiliser la recherche dans la fabrication de nouveaux produits, l’élaboration de politiques ou la prestation de services. Grâce à ce guide, on aura plus de facilité à convaincre les intervenants d’exploiter activement les résultats de la recherche.

We all know (or we all should know) it is important to engage end users (especially lived experience) upstream in the research program. How else do you know your research is going to help meet the needs of people who can benefit from the policies, products and services that are enabled by your research?

The private sector calls this consumer driven design.

Communicators always advocate knowing your audience.

Knowledge mobilizers call this stakeholder engagement.

There is literature on stakeholder engagement (see KMb journal club post). There are methods like the policy dialogue (see another KMb journal club post). Jonathan Weiss (CIHR Chair in Autism Spectrum Disorders Treatment and Care Research, York University) embeds stakeholder engagement in the work of his Chair and reports annually on his efforts (see his 2014 Annual Report as an example).

But where is the help to help the rest of us?

A researcher in the NeuroDevNet network recently forwarded a guide for research uptake. Research uptake is that moment when a non-academic research partner seeks to take the results of the research in house to inform decisions about their own policies, products and services. This is a critical step in mediating the pathway from research to impact. And effective stakeholder engagement can facilitate this moment of uptake.

Thanks to DFID (UK Department for International Development) this guide book and checklist (yes, there is even a checklist!) are posted at: https://www.gov.uk/government/publications/research-uptake-guidance

As instructed by this guide, effective stakeholder engagement has four stages each with three or four activities described in each stage:

1. Stakeholder engagement: working through informal networks and mapping out and connecting with relevant stakeholders

2. Capacity building: not all non-academic research partners have the capacity to take up research evidence. Building capacity for end user uptake is an important element…but is this the job of the researcher or possibly for allied intermediary organizations?

3. Communicating: synthesizing results, planning communications and publishing research results in accessible formats are all important to facilitate research uptake.

4. Monitoring and Evaluation: create a logic model including indicators to measure progress at each stage, gather data and feedback results into your research and research uptake processes.

DFID provides a note on advocacy and influencing decisions in partner organizations. DFID “encourages programs to foster evidence informed discussions of research evidence and to encourage decision makers to make use of the full range if research evidence on a given topic. However, research programs should not be lobbying for particular policy changes based on their research results.”

Really? I believe research institutions need to strive for neutrality but researchers themselves are often highly invested in a particular policy position. Why else do media channels ask academic researchers to comment on government positions? While research methods strive to remove bias from the evidence, that unbiased evidence is not necessarily value free from the researcher’s perspective.

And a note to ResearchImpact-Réseau Impact Recherche universities and other institutions with a knowledge mobilization mandate…. we don’t have discipline specific stakeholders but we do have institutional stakeholders such as United Way, community associations, municipal and provincial partners, Chambers of Commerce, etc. These institutional stakeholders should be part of our own stakeholder engagement efforts.

Thanks to Anneliese Poetz, Manager KT Core, NeuroDevNet for passing this along and for writing about her own tips for stakeholder engagement on the NeuroDevNet Blog, KT Core-ner.

 

Seeing the diamond in the rough: “Boaty McBoatface” a KT gem?

by Anneliese Poetz, KT Manager, NeuroDevNet

This week, a new $400 million research vessel made national headlines after asking for public input to name it.  The runaway #1 name was “Boaty McBoatface” and was far from the more serious meaningful suggestions the Natural Environment Research Council (NERC) had hoped for.  The news reported that the NERC still has the right to decide what to name it – as a KT professional, I am hoping they keep Boaty McBoatface if not for any other reason but to maximize the potential for their KT. [update: as of April 18, 2016 the science minister, Jo Johnson reports te government wants a name that ‘fits the mission’]

I understand the argument not to keep the name: researchers are concerned that their rigorous and important work may not be viewed as credible if the vessel it is carried out with is donned with a name that started out as a joke.  I believe this is a valid concern, however, I would like to offer a different perspective.  As a KT professional, I am aware that KT-conscious researchers, as individuals and, as part of research networks and organizations, are constantly seeking for a way to raise awareness about their work, to create “sticky messages” that audiences will remember.  Indeed, the effectiveness of any KT strategy begins with the ability to raise awareness about the project, the findings, the usefulness and potential application of the work.  While awareness does not guarantee uptake and implementation, if people don’t know about the research, they can’t even consider using it.

Awareness-raising for research projects typically aims to direct attention toward the evidence through dissemination activities such as: conferences, websites, social media.  An integrated knowledge translation approach is based on relationship-building to both inform the research in progress as well as act as a spokesperson to spread the research findings (and hopefully facilitate their uptake and implementation of evidence-informed recommendations into practice and policy).  Researchers, research networks, and organizations promoting evidence-informed decision-making sometimes seek spokespersons who are more broadly recognizable, to be ‘champions’ such as well-known celebrities or athletes.  The reality is, it is very difficult to achieve the desired level of awareness or ‘reach’ of research findings that could maximize uptake and implementation. Capitalizing on the popularity of “Boaty McBoatface” can be an effective means to direct attention to the researchers’ social media channels, websites, for achieving broader awareness of the research evidence.

Organizations have recognized the power of social media and try to create content that will be shared, and go ‘viral’, with the end result being uptake and implementation of their messages.  There is a fine line between ‘gimmicky-ness’ that could reduce credibility and cause people to ignore it, and something that can go viral while causing effective uptake of evidence-based messages. The European Centre for Disease Control (ECDC) created a hedgehog mascot to help convey messages about public health.  The United States Centre for Disease Control (CDC) launched a “Zombie Apocalypse” twitter campaign that ended up being so successful it crashed their website from visitors who wanted the information on emergency preparedness.

The NERC’s “name our ship” website crashed this past weekend due to the amount of traffic.  I can only think of this kind of public attention as something positive (for their KT), in fact, it is a rare and unexpected gift to the ocean researchers at its helm.

 

Who’s got the power? A critical consideration of citizen participation in research

by: Anneliese Poetz, KT Manager, NeuroDevNet

It is common for KT activities to be limited to dissemination of KT products such as research summaries, infographics or research reports/articles. Sometimes these products are created without consulting the stakeholders who represent the intended target audience, and what is typically measured and reported on is the numbers of these products distributed.  Dissemination is necessary, but usually not sufficient, to create impacts from research.

The two main approaches to Knowledge Translation are end-of-grant (dissemination) and integrated Knowledge Translation (stakeholder engagement/consultation). The evidence on successful KT has demonstrated that iKT approaches are more successful at creating impact. When I think about iKT I am reminded of the topic of my PhD dissertation which focused on a process analysis of a stakeholder consultation approach for informing government decision-making.  One of the frameworks I cited in my literature review was Arnstein’s (1969) ladder of citizen participation in community decision-making within the context of the ‘broader power structures in society’.  Arnstein’s (1969) ladder of citizen participation ranges from one extreme to the other, at one end citizens have all the power and at the other end they have no power at all.  Citizen power is sub-divided into “citizen control, delegated power, and partnership” (citizens have all/greater power) while tokenism is represented as “placation, consultation, informing” and non-participation in community decision-making is referred to as “therapy and manipulation” (non-participation, no power).

Figure 1. Arnstein’s ladder of citizen participation

An iKT approach is important for maximizing the uptake and implementation of research, toward impact. Recently, I found myself wondering how Arnstein’s ladder of citizen participation could map onto a research decision-making context.  For example, when a researcher takes an iKT approach to their work, they inform their research questions, methodology, KT products (type, key messages, delivery method, etc), workshops and other activities (toward moving their research findings into uptake and implementation) by using information about their stakeholders’ needs as a result of careful observation (of stakeholders as well as the current state of society, industry, government etc.) and listening to stakeholders.  However, as the subject matter and research process expert, the Principal Investigator/researcher (has to) use discretion in terms of how, where, and why stakeholder input contributes to the overall design and execution of their research (assuming stakeholders are non-researchers).  In this way, it is unrealistic to expect that citizens/stakeholders should be given complete control.  Even if stakeholders are researchers themselves, the Principal Investigator (PI) of the project has obligations (for example) to the funder of their research to reasonably deliver what was promised in their initial grant proposal.  In this way, the PI can be viewed as having more power than their stakeholders in terms of the research process.

However, in order for planned KT activities to result in successful uptake, implementation and impact of research, stakeholders need to feel that: they have been heard and their input is valued; their (information and other) needs are being met by the research project; the KT product(s) created will be useful/helpful to them and/or their clients.  In this way, stakeholders have potentially tremendous influence over the PI’s ability to achieve change through their research output(s). Persuading successful partnership engages stakeholders so that research can, should (and will, if possible given their organization’s capabilities) be used in practice and policy.  Often, they must surmount potential barriers such as stakeholders’ experiential (and other) knowledge, values and job descriptions as well as political and financial restrictions.

According to Arnstein’s ladder taking an integrated approach to KT helps to shift the power from researchers toward stakeholders, and into the “partnership” stage during which both stakeholders and researchers (PIs) redistribute power.  Stakeholders become more open to using research in practice and PIs become more able (through understanding stakeholder needs) to make the necessary adjustments to their research and KT approaches to enable uptake and implementation by these stakeholders.

It is reasonable then to say that effective, integrated KT takes place at the “partnership” level of Arnstein’s ladder.

What does Program Science have to do with Knowledge Translation?

by Anneliese Poetz, KT Manager, NeuroDevNet

Program science “is the systematic application of scientific knowledge to improve the design, implementation and evaluation of programs”.

The NCE Program in Canada strives to facilitate the achievement of socio-economic impact for Canada through cutting-edge research and innovation.  One social benefit of this Federally-funded research includes implementing innovations into programs that serve Canadians.  NeuroDevNet NCE strives to achieve impact for Canadians affected by neurodevelopmental disorders such as Cerebral Palsy, Fetal Alcohol Spectrum Disorders and Autism Spectrum Disorders.  One avenue is to achieve implementation of evidence-informed innovations into programs.  For example, after refining the exergame prototype, an innovation funded by NeuroDevNet and GRAND NCEs, this technology can expand the physical therapy options for youth with CP.  Integrating the exergame bike into physical therapy programs would be what we refer to as ‘implementation’ (see Figure below).

Phipps’ Co-Produced Pathway to Impact can be used within a Program Science approach toward impact of evidence-based interventions.

NeuroDevNet NCE has adopted Phipps’ Co-Produced Pathway to Impact framework which focuses on stakeholder engagement throughout all stages of the research process, and pushes the boundaries of traditional end-of-grant KT beyond dissemination toward uptake, implementation of new evidence into practice and policy, and evaluation of subsequent impact(s).  Consider that programs are governed by managers and the policies they develop, and the program’s services are delivered by practitioners.  Impact is measured by evaluating both quantitatively and qualitatively, how the program has made a difference for those they serve – in our case, NeuroDevNet is concerned with measuring how research that has been implemented into programs and policies has improved the lives of children and families affected by neurodevelopmental disorders.  So, after the exergame bike has been implemented into a program, we would follow up and evaluate.

Program science has become important for HIV program development because it provides information about what programs work, for which individuals.  The field of program science asks questions that relate to aspects of a program including strategic planning, program implementation (mix of interventions, synergy across interventions) and program management (sustaining effective interventions and modifying programs as new knowledge and interventions emerge, quality improvement processes).

NeuroDevNet supports the Chair in Autism Spectrum Disorders Treatment and Care Research, Jonathan Weiss.  Jonathan specializes in stakeholder consultation with diverse stakeholders including program planners/managers for informing his research, and researching interventions in order to make an evidence-base available for uptake.  This evidence-base can then be used by practitioners and policymakers to inform their decisions with respect to which interventions they choose to provide within programs and organizations (such as schools), and how these interventions are delivered.

NeuroDevNet’s FASD program is embarking on a new project this year to develop and test program materials for frontline workers in Children’s Aid Societies to improve their practice. This project is being done with the full involvement of frontline practitioners and program managers throughout the research process.  When there is an evidence base for these tools and training to show its effectiveness at the study sites, program science can inform the scaling up of the research findings toward improving practice across Canada.

“One aspect of program science is implementation research, which is concerned with the development and implementation of evidence-based interventions…it can also provide information about how interventions can be adapted to new situations or communities…program science typically involves an ongoing process of engagement between researchers, policy makers, program planners, frontline workers and communities through which research is embedded into the design, implementation and continuous improvement of the overall program. Because the focus is on how an entire program impacts a population, program science typically involves consideration of overall health systems” – CATIE

It appears that we (NeuroDevNet, the NCE program, and many Knowledge Translation practitioners) may, in fact, be using a program science approach without knowing it.

How do you think you might already be using a program science approach to your work?

How can the principles of program science that are used for informing HIV programs, be translated into programs for children and families affected by neurodevelpmental disorders?

What can the field of KT learn or adapt from the field of program science? 

Do you think a program science approach can help you (as a researcher, as a KT professional) scale your proven interventions to other health systems, cultures, programs, or geographic regions across Canada and internationally?

What is “Impact” and how do you measure it?

by Anneliese Poetz, KT Manager, NeuroDevNet

For NeuroDevNet, impacts of research and training are achieved when children with neurodevelopmental disorders:
• Are diagnosed sooner
• Receive validated interventions as soon as possible
• And their families are supported through the life span

Related to these, impact is achieved when we make a difference – changes to existing policies or the implementation of new ones, or changes in the way caregivers and/or health practitioners approach their work with children and families. Impact is also helping improve the quality of life for children and families in unexpected ways. In the field of Knowledge Translation (KT), there is still ambiguity about how to measure and report on ‘impacts’ of KT. NeuroDevNet frames its Knowledge & Technology Exchange and Exploitation (KTEE) activities using Phipps’ Co-Produced Pathway to Impact evaluation framework which encompasses the Network’s KT activities as well. If impact is what we are trying to achieve, then KT is one of the means to help us achieve it.

When thinking about KT in terms of evaluation and reporting on KT activities, several quantitative measures easily come to mind: # of peer-reviewed publications, # of citations of one’s research publications, # of conference presentations, # of KT Products created, etc. However, these measures do not go far enough – notice that these are all indicators in the ‘dissemination’ phase of the CPPI. Typically, this is where KT activities ‘stop’ – it is the point of departure for researchers move onto the next research project. But stopping at the “dissemination” (otherwise referred to as end-of-grant KT) stage doesn’t help you measure the impact of your research.

In order to find out whether your research has been considered useful (in practice, or policy, or otherwise) you have to go and ask the people 1) who you engaged in your research process (integrated Knowledge Translation), and 2) who you imagined would find your research useful once it was completed even if they did not directly participate in informing your research questions or process. Yes, qualitative interviews!

The KT Core conducts qualitative interviews with its researchers, trainees and most importantly its collaborators and partners. There is a lot of good work going on in the Network, and these interviews are for the purpose of discovering stories about how NeuroDevNet’s research and training have made a difference. Some of them might not have otherwise been discovered and/or reported on. The first interview is always with the researcher or trainee. Then, we ask them who their collaborators/partners were, and whether they would be willing to broker an invitation for an interview so we can ask questions about the impact of NeuroDevNet’s work from their perspective. How have we changed things for them in their organization? Their practice? For the children and families they serve?

An example of a story we discovered was through one of our trainees, Angelina Paolozza, in the FASD program of research. Angelina was invited to present at Adopt Ontario after someone from that organization saw her present her research at a local hospital. Angelina was able to adapt her presentation style to be compatible with an audience of prospective parents. After her presentation (the 2 times she has been invited) the audience had the same response – many parents said that now that they understood FASD after hearing her describe her research they would revisit the files they had reviewed on children with FASD. Talk about impact – a child in a stable home has a much improved life trajectory and quality of life. The basic underpinning of any effective KT activity is relationships – and this impact was achieved through the relationship built between NeuroDevNet and Adopt Ontario.

Getting these stories is not just useful for reporting purposes, but it is also valuable for us as a Network to learn what works and what needs more attention/improvement in terms of our collective KT activities. By learning how we can best achieve impact, we can maximize the chances that we can repeat and scale our efforts.

If you are a NeuroDevNet researcher, trainee or collaborator/partner and you have a success story you would like to share, please contact the KT Core and we can help draft it into a formal ‘success story’ to be placed on the NeuroDevNet website as part of a series.

When is a Chair not a “chair”? Review of the 2nd Annual Stakeholder Meeting on Autism Research in Canada

by Anneliese Poetz, KT Manager, NeuroDevNet

Dr. Jonathan Weiss speaks at his 2nd annual ASD Stakeholder Meeting

Dr. Jonathan Weiss, Chair in Autism Spectrum Disorders Treatment and Care Research opened his stakeholder meeting on November 7, 2014 by explaining he isn’t a “chair” in the literal sense – drawing laughter from the gathering of 65 self-advocates, family members, policymakers and practitioners from: the Canadian Federal government, Canadian-funded research entities such as NeuroDevNet, and community based non-profit organizations.

Dan Goldowitz, Scientific Director of NeuroDevNet networking with Doug McCreary, parent of 2 children with ASD

Successful Knowledge Translation (KT) is based on relationships, and stakeholder consultations provide an opportunity for ongoing relationship building – with the researcher(s) as well as networking among stakeholders.

Among presentations from several organizations present, Dr. Weiss provided an overview of the work he’d accomplished as Chair in ASD Treatment and Care Research for 2013:

http://iframesrc=//www.slideshare.net/slideshow/embed_code/41653786width=425height=355frameborder=0marginwidth=0marginheight=0scrolling=nostyle=border:1pxsolid#CCC;border-width:1px;margin-bottom:5px;max-width:100%;allowfullscreen/iframedivstyle=margin-bottom:5pxstrongahref=//www.slideshare.net/NeuroDevNet/chair-progress-nov-2014-finaltitle=ChairinASDTreatmentandCareResearch2014-Updatetarget=_blankChairinASDTreatmentandCareResearch2014-Update/a/strongfromstrongahref=//www.slideshare.net/NeuroDevNettarget=_blankNeuroDevNet/a/strong/div

Large group report-back after small group exercises

Stakeholders were then invited to work in small groups on exercises designed to provide feedback to Dr. Weiss for the purpose of informing his future research.  The breakout group exercises were followed by a large group report-back.

From a KT perspective, it is important to involve (diverse) stakeholders in informing your research  in order to maximize the relevance and subsequent uptake of your findings. In other words, if your research is responsive to the knowledge needs of the people who you hope will use your findings they will be more likely to use it. Even if a particular end user was not personally involved in your consultation events, if your research was responsive to the needs of stakeholders similar to them (e.g. front line workers in similar occupations) they are more likely to find your research relevant than if you hadn’t asked for stakeholder input. If the ‘end users’ find your research useful, it has a better chance of ‘uptake’ into practice, policy and other decisions.

Isaac Coplan (NeuroDevNet KT Coordinator) and Tamara Germani (NeuroDevNet trainee) check in delegates at the registration desk for Dr. Weiss’ Nov. 7 stakeholder event

The KT Core provided support for this stakeholder event by advising on: the agenda, small group activities, meeting evaluation forms, and Dr. Weiss’ presentation slides. During the event, we provided logistical support at the registration desk, tweeted during the event from @neurodevnetKT and @anneliesepoetz (along with Dr. Weiss @DrJonathanWeiss) and captured photos and video footage. These photos and videos will be used in social media, reports, and for creating a video about the day including video interviews with Federal MP Mike Lake and Senator Jim Munson, as well as Doug (father) and son Mike (comedian and self-advocate) McCreary and Autism Speaks Canada. We received the following feedback about our services:

“I greatly appreciate all of the time and effort you put into helping Jonathan and I get organized and for sharing your knowledge and experience with us. The day would absolutely not have been as successful as it was without your contributions. I sincerely hope to have an opportunity to work with you both in the future.” – Carly Albaum, Lab Coordinator for Dr. Jonathan Weiss

“I’d like to echo Carly’s sentiments – this year’s event surpassed the initial one in my estimation…this is great momentum and we have a great team!” – Dr. Jonathan Weiss

“Appreciated your expert eye for detail Anneliese. Very positive feedback from all the delegates I spoke to.” – Neil Walker, facilitator

If you are planning a stakeholder consultation, contact the KT Core to find out how we can help.

Knowledge Translation (KT) is an attitude before it is a process

by Anneliese Poetz, KT Manager, NeuroDevNet

If you search for KT models in the literature, you will find several ‘models’ for how KT should ideally happen. Many are comprised of a complex configuration of boxes, arrows, 3-D cone shapes to show the ‘process’ for doing KT (mostly end-of-grant KT). As a result of my PhD work, I developed a KT model that is grounded in the qualitative data I collected, that shows how KT actually happens in complex decision-making systems (for integrated-knowledge translation and end-of-grant KT). I also know that some develop their own model for describing and guiding the process for doing KT in their specific organization. But one thing is true no matter what model or context you are operating within: before you can effectively utilize any model or process for doing KT the people involved have to have the right attitude. If they don’t, even the ‘best’ KT process/model in the universe won’t be effective.

So what is the right attitude? You have to really want to do KT. That’s it.

Below is certainly not an exhaustive list but it gives you the idea.  For:

1) Researchers (graduate students to established researchers): you have to sincerely want your research to be useful and used. You need to think at the outset of your research “who will actually find this research useful as I have proposed it?” and go talk to some of them, tell them what you are planning to do and be responsive to their feedback. Being responsive means being willing to change some or all of your research questions in order to make sure your research will answer the questions they have – this is also called addressing gaps in knowledge/evidence.

However, having the right attitude towards ‘end-of-grant KT’ (dissemination) is different than having the right attitude towards ‘integrated knowledge translation’. If you involve these and other diverse stakeholders in the research process, this is called ‘co-production’ and is the most effective way to achieve uptake, implementation and ultimately impact of your research.

If you do these things, you will have maximized the chances your research will useful and used.

2) Decision-makers: you have to sincerely want to make evidence-informed decisions and you have to have the organizational support to do so. Decision-makers include practitioners such as frontline staff such as nurses, doctors/clinicians, occupational therapists etc. (since they make several decisions during the course of their work day) as well as program managers (since they make policies, decisions about program components, therapies offered, intake criteria for potential clients which includes assessment and diagnosis) and hospital (and other) CEOs.

3) Organizations: Most people I’ve met are sincerely interested in making decisions based on the latest science. However, they face barriers such as: lack of time to read/absorb journal articles and limited access to journals. Other barriers could include organizational policies and procedures that require things to be done in a certain way, financial (limited resources), political (community/public pressure), and client/patient preferences (for example, treatment options).

So, individuals need to have the right attitude towards KT, but even then the organization has to facilitate this with its own expression of attitude toward KT evidenced by investing in the necessary structure and supports. For example: facilitating access to scientific journals and providing staff with paid time to get up to speed on the latest research (e.g. time to read literature, meet with researchers, attend conferences, attend stakeholder consultations being led by a researcher as part of their IKT, etc.).

Perhaps more importantly, organizations (including governments) that are willing and able to make the effort to stand up to political pressure by making the right decision as supported by the evidence instead of the decision that is popular in the community demonstrate a strong attitude toward evidence-informed decision making.

An example of this can be found in the history of the supervised injection facility in Vancouver called Insite. After a long battle over community (mis)perceptions about the impact it would have, Insite has provided much evidence to show its positive impact on the health of the community, the individuals who attend the clinic, and savings to the health care system.

 

If you are a NeuroDevNet researcher or trainee and need help developing a KT plan (our KT planning service) or finding key stakeholders to consult with or involve in your research (our brokering service), contact the KT Core. In addition to brokering relationships we can offer tools/guides, advice, and review of your KT Plan for end-of-grant and integrated KT.

Critical Considerations for doing Stakeholder Engagement for Research

by Anneliese Poetz, KT Manager, NeuroDevNet

When I began my PhD studies in 2003 it was before terms like “Integrated Knowledge Translation” (IKT) and “Co-Produced Research” were common. In my graduate program people would joke about how their predecessors had placed a $10 bill in their dissertations only to return to the library years later to discover it was still there – nobody had read it. Wow, all that time, money and effort wasted on something that would never be used – I didn’t find it funny at all. I really wanted my research to be used, so after I crafted my research questions I went and talked to the people who I imagined would use my research: CEOs, government regulatory agencies, industry. I also attended their conferences and listened for what were the issues that were important to them. As a result of this new understanding about my end-user’s needs, I changed 80% of my research questions because I realized I was asking the wrong ones. The result was my research was found interesting and useful by those end-users that I had consulted. I completed my research in 2010, and emailed the first of 3 papers I published to the President and CEO of the Canadian Nuclear Safety Commission (Dr. Michael Binder). I received this email response on January 22, 2011 “Very interesting study. I have the taken the liberty of circulating to staff at CNSC. Thanks for sharing”. The results of my research which recommended ongoing stakeholder engagement, resulted in Bruce Power’s creation of several social media channels such as twitter and a community blog in 2011, and a facebook page in 2014 (I checked with an employee at Bruce Power who confirmed that these avenues for stakeholder engagement represented uptake of my research results).

It is important to involve a diverse range of stakeholders in any consultation or stakeholder engagement activity

Now, over a decade later, this kind of involvement of end-users including policy- and decision-makers has become a requirement of funding agencies such as CIHR. This is an important overall paradigm shift: from research that is done in isolation with no consultation or thought about who will actually use the research and whether what you are doing will be relevant to them, to a more responsive approach that is intended to meet the needs of decision-makers including practitioners. In the field of Knowledge Translation we call this “stakeholder engagement” (a stakeholder is anyone who will be directly or indirectly affected by decisions made based on your research findings).

There are several researchers who are doing stakeholder engagement. For the past several years NeuroDevNet’s Neuroethics Core has been conducting workshops and other in-person events to engage their diverse stakeholders (such as health care providers, researchers, patient advocacy groups) in their research, so that they can be responsive to their needs.  NeuroDevNet’s FASD project has engaged stakeholders in the development of their “Strongest Families” research project. Customization of the course material was achieved through phone interviews with clinicians (specializing in FASD) and families and the program is based on the needs they articulated.
And that is the key to stakeholder engagement – being responsive to the needs of your stakeholders including end-users. Stakeholder engagement can include regular in-person meetings, dialogue through social media, or other forms of communication such as teleconferences or online meetings.

If you are not prepared to be responsive to stakeholder input, then don’t engage your stakeholders. Be honest with yourself – are you prepared to change your research questions, methodological

If you don’t plan to listen and respond (by adapting your research questions and/or methodology) according to what your stakeholders are telling you, don’t ask for their input

approach, etc. based on input from your stakeholders? If you are not prepared to be flexible and responsive throughout the research process, then don’t ask for input. You will do more harm than good – it will cause irreparable damage to the relationship. People will feel used, and it will create distrust, conflict (which includes avoidance and refusal to use your research in decision-making), and ultimately the usefulness of your research findings will not be maximized.

Be responsive to the system in which your research occurs
The field of KT is now recognizing the importance of the entire system. If stakeholder engagement is considered “Integrated Knowledge Translation”, and IKT occurs within a system, then you as a researcher also need to be responsive to changes to the various levels of the ‘system’ in which you are doing your research. Changes to the system include: new research discoveries, new diseases, new technologies, news in another part of the world, new legislation and regulations…you get the idea.

Keys to effective stakeholder engagement summarized:
1) Make people feel valued by sincerely listening to their input, keeping them informed about the progress of the research, and closing the loop at the end of the project.

2) Use different forms of stakeholder engagement – in-person meetings are best but you can use social media to expand your networks beyond what is possible in-person, as well as to keep in touch with people in between meetings.

3) Involve diverse stakeholders especially end-users in your research design, and be prepared to be responsive to their input even if the research is already in-progress.

The main message is: successful knowledge translation occurs as a result of trust (in the source of the information being used to base policy and practice decisions on) which is a result of good relationships and ongoing relationship building. This requires several levels of flexibility and openness as a researcher. If you sincerely want your research to be useful, good stakeholder engagement is the way.

The KT Core is building networks via social media (LinkedIn, facebook, twitter) and will be leading a cross-jurisdictional cross-Network in-person stakeholder consultation in year 6. If you are a NeuroDevNet researcher, trainee or partner and need help with in-person or online stakeholder engagement for your individual project(s), contact the KT Core for tools and advice.