What do the acronyms TEDx, ASD and iKT have in common?

Source: What do the acronyms TEDx, ASD and iKT have in common?

This week’s guest post comes from the ASD Mental Health site, Dr. Jonathan Weiss’ Blog. It was first published on April 13, 2016 and is reposted here with permission. 

by Drs. Jonathan Lai & Jonathan Weiss

On Saturday May 28^th, the Chair in ASD Treatment and Care Research^[1] will be hosting Spectrum, a TEDxYorkUSalon focussing on concerns relevant to transition-age youth and to adults with Autism Spectrum Disorder.

When the Chair was first launched, we asked stakeholders (e.g. people with ASD, clinicians, family members, policymakers, and researchers) how they wanted to be engaged with, both in terms of what we’re doing, and what was going on in the Canadian field of autism research. The message was clear: we need more than one approach, for multiple types of audiences, including those we already knew as well as those in the autism community we had not yet reached. So how best to develop a dynamic, accessible, and efficient way of exchanging knowledge about autism across so many different perspectives? This is where TEDx comes in.

Our upcoming event is part of our strategy of innovative knowledge mobilization and stakeholder engagement. Since knowledge translation is a learning process among stakeholders with different perspectives and expertise, we have involved people with ASD, parents, researchers, educators, policy makers, and service providers as presenters. The presenters will give short 8-minute talks which will be placed online following the event and made freely accessible to the public.

The well-known and appreciated TED format is all about developing, refining, and sharing ideas in an entertaining way, both for those present in the physical audience, as well as those in a virtual audience who can access the talks worldwide. It’s a format, and a brand, that has tremendous recognition and a demonstrated ability to break down complex knowledge into a format that can appeal to a wide range of audiences: it’s open to everyone. Since our goal is share the knowledge that’s been generated in the Canadian autism community openly, we are creating broadly appealing content that will be available through the TEDx in-person and online platforms. We believe it will be an effective method to bring multiple perspectives together and listen to one another.

How can you plan your own TEDx event?

A TEDx event is not an easy thing to coordinate or one that can be developed in only a few months time. You will need dedicated personnel; we have one person (JL) who is dedicated to coordinating all aspects of the day over a 12 month period, for about one day a week.  Our timeline was as follows, based on our capacity:

Timeline (# months in advance of event date)	Task to be completed
10 months	Read TEDx guidelines, craft vision and goals
9 months	Find a venue and date, have an budget
8 months	Curate speakers, identify sponsors and partners
7 months	Construct a program (running order)
6 months	Form your teams (A/V, volunteers)
5 months	Coach speakers (monthly emails, one-on-one sessions)
5 months	Build a website (marketing)
2 month	Promote to your audience (marketing)

First, craft your vision and goals (10 months ahead of time). It’s important to think through and articulate your vision (how would you define success?) and then identify how you can evaluate whether and to what extent you achieved your goals. Our vision and goals were to: 1) make topics of ASD research accessible, 2) build enthusiasm about research and 3) expand reach globally to people living with ASD, students and service providers. This shaped the types of questions we asked on our evaluation forms. For example, we hope that the TEDxYorkUSalon event will lead to greater excitement, optimism and familiarity about Canadian research in ASD and with regard to how people view ASD more generally. We ask questions about these topics in an optional questionnaire when they register, and will do so again after the event, to measure individual change.

As you begin this goal setting and visioning process, read the guidelines to know what goals are feasible. The TEDx Organizer’s Manual had many helpful tips and a step-by-step guide on how to organize an event like this properly. Since this is our first time, we had a steep learning curve. There are various guidelines for the different types of events. TEDx licenses are given to people based on location (e.g. TEDxNewYork, TEDxToyko, TEDxUniversityofLeeds, TEDxYorkU) and there are different guidelines for each event type with respect to: the number of attendees, types of sponsorships, branding of the event etc. We decided to run a Salon event under TEDxYorkU – a smaller event run under approved TEDx license holders because it allows us to explore a more specific topic rather than a general theme. Your vision and goals must align with the type of event – as that determines the structure that enables what you can do.

Ultimately it’s crucial to stick with TED’s strictly prescribed format, which can be difficult for us researchers who are used to having full control over the design and execution of our own events. By choosing to go with the TEDx format, it meant letting go of some of that control. We learned that we had to be flexible – working with a brand with licensing guidelines, we had to adapt each time we were constrained by requirements. For instance, we had to ensure the number of presenters and attendees were approved and that sponsors were not related / perceived to influence/bias talk content. Further, we had to figure out how to brand the event properly – the Event webpage couldn’t be associated with our research brand (Chair website, ASDMentalHealth Blog, or even York University). We would encourage on-going communication within your team and those involved so everyone is on the same page.

Looking for an appropriate venue, we kept in mind not only costs but accessibility for families – as well as technical requirements for our event (e.g. lighting, staging). With the depth and breadth of enthusiastic, passionate Canadian researchers, advocates and parents available, we had no difficulty finding individuals who could fit the TED requirements. Our speakers are up for the challenge, currently being coached to chiselling their passion, knowledge and experience into a tight 8 minutes. Similarly, finding partners and sponsors for the event was not a big challenge. Many organizations that shared the same vision of KT and gladly supported us, including the Faculty of Health at York University, NeuroDevNet, Kerry’s Place, Geneva Centre for Autism, Sinneave Family Foundation, and the Ontario Brain Institute.

We worked with an expert at York University who has successfully run TEDxYorkU over the last few years (Thanks Ross!), building on his success and his wisdom about what’s required in terms of advising speakers, creating an exciting schedule, space and technological issues. NeuroDevNet’s KT Core will be in attendance to engage with stakeholders and capture this engagement on video. Video taping of individual speakers is also being arranged through York University’s Learning Technology Services video team, who have had experience working with TEDxYorkU in the past and were familiar with TEDx guidelines.

Overall, familiarity with TEDx guidelines, building a team (e.g. with sponsors, speakers, technical support) and having consistent communication with those involved within is important to create a successful event. The exchange of ideas and having different perspectives (not just researchers) is, after all, the point of doing iKT!

For more information about this event, and how to register, please visit: http://www.tedxyorkusalon.org/ or contact Dr. Jonathan Weiss (jonweiss@yorku.ca) or Dr. Jonathan Lai (jonlai@yorku.ca) for details.

---

_{[1] The Chair in Autism Spectrum Disorder Treatment and Care Research is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation. Additional support from York University and ORION’s O3 Collaboration.}

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.

Who is minding the “research to impact” shop?

by David Phipps, KT Lead, NeuroDevNet

In a recent knowledge mobilization journal club David Phipps (Executive Director, Research & Innovation Services at York University and KT Lead, NeuroDevNet) questioned, “Whose job is it to ensure research moves from creation to impact? The simple answer is no one. No one is minding the shop. Individuals are acting individually and not in a coordinated fashion.” No one except NCEs like NeuroDevNet.

The role of a Network of Centres of Excellence is to “meet Canada’s needs to focus a critical mass of research resources on social and economic challenges, commercialize and apply more of its homegrown research breakthroughs, increase private-sector R&D, and train highly qualified people”. At NeuroDevNet we do this by focusing our research, training and knowledge translation efforts on three goals:

1.  Earlier diagnosis of neurodevelopmental disorders
2. Application of validated interventions for children with developmental disorders sooner
3. Better supports for children with developmental disorders and their families

Research helps create new knowledge and new understanding in diagnostics, interventions and supports. It is the job of knowledge translation to help connect those researchers and that research to partners and receptors who can turn that research into new products, policies and services that then have an impact on the lives of children living with neurodevelopmental disorders and their children.

There are many (MANY) frameworks and models for knowledge translation. A very popular framework is the knowledge to action (KTA) cycle adopted by CIHR as their framework for KT. This model has a knowledge creation/synthesis component and an implementation into action component. I recently reviewed a paper that asked if and how researchers are using the KTA Cycle.

The answer: not many and not completely.

Many researchers reference KTA but few actually implement it and none report using it in its entirety. In fact, it was never meant to be used from start to finish by a single investigator.

Really? As I asked in that journal club post, “Whose job is it to ensure research moves from creation to impact? The simple answer is no one. No one is minding the shop. Individuals are acting individually and not in a coordinated fashion.”

If no one is minding the shop no wonder it can take a reported average of 17 years for health research to move into clinical practice.

NCEs like NeuroDevNet are accelerating both discovery and application of research by operating in a coordinated fashion. In addition to coordinating research and training NeuroDevNet also provides professional KT services across the network and embeds KT as a partner in projects that have a high potential to create impacts on policies, products and services. In this manner NeuroDevNet KT supports the application of research and facilitates its transition towards impact.

NeuroDevNet is minding the neurodevelopmental shop. And the KT Core is maximizing the impact of research on the lives of children living with neurodevelopmental disorders.

What happens when like-minded organizations come together? #C4BD

by Anneliese Poetz, KT Manager, NeuroDevNet

I recently attended NeuroDevNet’s Community for Brain Development inaugural face-to-face meeting in Ottawa, ON this past October 6, 2014.

Despite having attended 2 teleconferences prior, and providing input on the agenda and facilitation of this first face-to-face meeting, I have to admit, I didn’t know what to expect.

I was delighted at how good natured and sincere everyone was, and it was made better by a collective sense of humour that carried throughout the day. This day-long meeting was characterized by a tangible synergy in the room.

The highlight of the day was when representatives from the 21 organizations in NeuroDevNet’s Community for Brain Development self-divided into 3 groups based on their interest in either: training and development, advocacy and policy, or knowledge translation. Facilitated discussions continued until 3 top ideas emerged, representing what they thought were the greatest needs within training, policy or KT specific to early brain development and what they are doing in their respective organizations. The outcome was a list of several activities the group could work on together each led by a different C4BD sub-group of members who volunteered their time and resources.

Jan Willem Gorter (CanChild) facilitated the KT discussion and NeuroDevNet’s KT Core have planned a follow up discussion to figure out “what’s next”.

The day ended with short presentations by 2 MPs (Mike Lake and Eve Adams) and the Deputy Director of BL-NCE and NCE programs Stéphanie Michaud. Mike Lake’s message was poignant: not only do you need to come together as a community you need to have the right people. Looking around the room, he said, he believed we have the right people to be able to make a difference. Based on my experience that day, I think he’s right.

The KT Core provided support before the meeting by providing input into the structure of the meeting agenda and facilitation techniques including crafting a focus question for the small group breakout discussions. During the meeting, the KT Core took photos and video footage (photos for use in future presentations and reports, footage for creating a video about the Community for Brain Development), assisted with flipchart note-taking, tweeted in real-time, and participated in the large and small group discussions contributing KT expertise.

If you have created a community of practice within NeuroDevNet or are planning a stakeholder meeting, contact the KT Core for support.

 

Reflections on my time as NeuroDevNet’s KT Coordinator

by Elle Seymour, KT Coordinator, NeuroDevNet

I will always think back on my time with NeuroDevNet with fondness and a great amount of respect for the people I have worked with and the things I have learned. When the KT Core moved to York, I was fortunate enough to become their new Coordinator. When I started this job I knew there would be a steep learning curve as I had never practiced KT before. This was made much easier by my manager, Anneliese Poetz, who also became a great mentor to me. Anneliese is extremely knowledgeable about KT and when you combine Anneliese and David (Phipps) you certainly have a tour de force on your hands. I worked closely with both Anneliese and David and cannot overstate how much I have learned from them. Apart from KT knowledge, Anneliese is a skilled videographer and has a knack for the visual arts and a love of puns. David’s passion for KT comes across whenever you talk to him and this passion makes him not only an expert on the subject but someone who motivates you to excel in your position.

I have always believed that you learn more from your challenges than your failures and there were certainly a few growing pains this year. At the time, these may have felt like failures, however, the wealth of information we gained has most certainly made it all worth it. One of the major challenges we faced this year was the Research Snapshot project. From technical to production aspects there seemed to always be a new problem. All of these problems turned into great lessons and I can move forward with the knowledge that every difficulty we experienced we overcame. Practice does in fact make perfect and I am happy and proud to have been part of the KT Core during this process and helping to finalize the first Research Snapshots for NeuroDevNet.

There were certainly a few surprises along the way and one of these was the fact that KT principles are easily transferrable. Previously I had thought that I would need to learn science-specific KT tools and techniques but this was not the case and I learned that much of KT is transferrable across a range of disciplines. Another surprise I encountered was how much I would grow to respect and love KT, in my opinion it is vastly underappreciated. Luckily, there are practitioners such as Anneliese and David who see the bigger picture and are willing to use KT to keep working towards a more impactful future.

I will miss this position as it has taught me so much and I feel as if there was a good mix of practical and theoretical as we were able to brainstorm how to solve problems and then apply the various solutions we had chosen. This meant that I did not feel alienated from the products the KT Core created and instead was involved in every step of the process. I feel as if the field of KT allows more room for creativity than many other disciplines which is refreshing to see in the current job market. What’s next in store for me? I am hoping to continue working in KT in London (UK) as I still feel as if I have a lot to learn and contribute. I am also considering the possibility of pursuing a PhD. What comes next is uncertain, however, I am absolutely convinced that whatever career path I pursue this position has left a lasting and positive impact on me. It has given me a new perspective on community engagement and research and I believe it will strongly influence and shape my future work.

A lot can happen in a year – report on NeuroDevNet’s KT Core

by Anneliese Poetz, KT Manager, NeuroDevNet

It’s hard to believe that on August 6, 2014 it will be one year since I started as Manager of the KT Core for NeuroDevNet. The year has flown by, and I am proud to say we have accomplished a lot in what feels like a very short time. It has truly been a team effort, both within the KT Core and with our Knowledge Translation colleagues in York’s KMb Unit.

The infographic below is a visual representation of the services we have provided to researchers, trainees and partners from August 6, 2013 – present.

Brokering: one of the most memorable relationships we brokered was between NeuroDevNet, the Maternal Infant Child and Youth Research Network (MICYRN) and the new Canadian Clinical Trials Coordinating Centre (CCTCC) prior to submission of NeuroDevNet’s renewal application June 11, 2014. By connecting these organizations and having a conversation about possible ways to work together, several concrete activities were identified and included in the application, relating to the development of NeuroDevNet’s IMPROVE Clinical Trials Network.

Events: Tamara Bodnar and Parker Holman are NeuroDevNet trainees who came up with an innovative curriculum for science teachers so kids can do an experiment and see with their own eyes what the effect of alcohol is on a developing organism. The KT Core helped by providing feedback on their event flyer and the event’s evaluation questions, faxing the event flyer to the list of schools provided by Tammy and Parker, and producing a video about the day.

Products: New things since last year are the production of almost 40 ResearchSnapshots which are clear language summaries of NeuroDevNet-supported scientific research, review and vetting of the most current social media guides based on usefulness to researchers/trainees, our youtube channel where you can find KT videos about NeuroDevNet research, and the KT blog you are reading right now! We only have 6 videos posted on our youtube channel, but we reported 11 because we helped advise on the 5 videos created for the Neuroethics Core’s CENDS video series.

Evaluation: When I started, we had David Phipps’ (Executive Director of Research & Innovation at York University, and NeuroDevNet KT Core Lead) Co-Produced Pathway to Impact Framework and an idea of what services we’d offer,

but since then we have worked together to map the services onto the framework. We have subsequently developed indicators

that will help us evaluate our services so we can make decisions about where it is best to allocate our resources to be the most useful. If our quantitative and qualitative indicators are adopted and/or adapted by other NCEs it could also be possible in the future to compare KT Services across NCEs. Interviews are ongoing, and give us qualitative information about KT successes in the Network about the needs of researchers and trainees that we can use to improve our services.  We are learning about KT successes such as Angelina Paolozza’s presentation to Adopt Ontario. After explaining her eye-tracking research and helping prospective parents understand more about kids with FASD, all of the parents told Angelina they had changed their minds and would now consider adopting a child with FASD. We will be writing and posting some of these “KT Success stories” online.

Planning: The KT Core reviewed 15 grant applications and provided written feedback on the researcher’s KT Planning strategy for their research, which was often followed by a telephone conversation. We were pleased that most of these applications were successful.

Stakeholder engagement: KT depends on relationships. Period. That’s why the KT Core is growing its networks of stakeholders online (see social media on infographic above), and is gearing up for an in-person stakeholder consultation with diverse stakeholders so we can make sure the work we are doing addresses their information needs (thereby increasing the likelihood it will be useful).   We are engaging in conversations using facebook, twitter and LinkedIn and learning a lot about our stakeholders and their information needs. Recently, we distributed the recruitment poster for the FASD Discovery Project’s “Strongest Families” study as well as a resource package for families that don’t qualify to participate. Members of NeuroDevNet can contact the KT Core to ask us to put forth questions to members of our online networks to inform their research, or to disseminate information.

Finally, we’ve refreshed the KT tools section of NeuroDevNet’s website – only the most useful tools and guides for doing KT are there, and are sub-divided into each of the services we provide.   We also provide capacity building/training by request as needed. Now that you have seen examples what we have done, contact the KT Core if you are a NeuroDevNet researcher or trainee and ask how we can help maximize the impact of your research.