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 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

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:

Large group report-back after small group exercises

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

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.

What is “Day on the Hill”?

by Anneliese Poetz, KT Manager, NeuroDevNet

Day on the Hill is an annual event where NeuroDevNet researchers, collaborators and partners visit with MPs and Senators on Parliament Hill in Ottawa. The conversations that we had during these visits provided insights that can be used to inform NeuroDevNet’s current and future work.

This past October 7, 2014 I had the pleasure of travelling to Ottawa, ON to participate in NeuroDevNet’s “Day on the Hill” event. It was not the first, in fact, this was NeuroDevNet’s 4th…but it was my first time attending. I had heard people talk about it but I really didn’t know what to expect, and I was eager to find out. This Day on the Hill also followed the inaugural meeting of NeuroDevNet’s Community for Brain Development.  These two consecutive events meant that we had representation from like-minded individuals from organizations across Canada united by our concern with children’s brain development.

AnthonySantelices_brightened

Anthony Santelices, project officer, was the mastermind behind the planning and coordination of the day. Prior to the event, we were provided with an information package about what our ‘ask’ was.

 

 

Team #5 (left to right): Doug Maynard, Stephanie Jull, Amy Salmon, Anneliese Poetz

Team #5 (left to right): Doug Maynard, Stephanie Jull, Amy Salmon, Anneliese Poetz

In the information package it also told us what team we were on – we were split into teams of 4-5 people. All of our meetings had been pre-arranged, and we were provided with the names of the MPs and Senators we were meeting with that day, the time(s) and location(s). I was on “Team #5” and I was lucky to have such great team mates as: Stephanie Jull (Canucks Autism Network), Amy Salmon (CanFASD) and Doug Maynard (CAPHC). We had only just met the day before, but we had such great synergy among us that some of the MPs thought that we’d known each other for a long time!  Our team ‘quarterback’ was Doug Maynard, and he helped us navigate around the Hill to find our meeting locations with grace.

 

Team #5 meeting with Senator Jane Cordy
Team #5 meeting with Senator Jane Cordy

While we came with a unified message, it was equally important to listen. Each MP had someone who they cared about who was affected by a neurodevelopmental disorder. Everyone we met with was down-to-earth and really cared about making things better for Canadians with NDDs.

I made notes on their concerns such as: cost-effectiveness of interventions, support for transition of youth with NDDs into adulthood, and the importance of input from (and support for) families of children with NDDs.

These were important insights for KT for several reasons:

  • It validated the importance of placing a focus on health economic evaluation of NeuroDevNet’s diagnosis and intervention innovations for uptake into decision-making.
  • The Community for Brain Development meeting also identified “transitions” as an important consideration for children with NDDs. Transition periods include: kindergarten to grade 1, grade 8 to high school, and high school into adulthood.
  • NeuroDevNet recognizes the importance of engaging with families to inform research, policies and programs.

NeuroDevNet has successfully engaged with policymakers and practitioners over NeuroDevNet’s first 5 years and is committed to continuing these activities for similar KT events such as stakeholder consultations and conferences.

If you are a NeuroDevNet researcher or trainee and are planning a conference, stakeholder consultation, or other KT event or if you would like to explore ways you can involve your stakeholders in your research, contact the KT Core to see how we can help.