Connie Putterman – Seasoned Parent Advocate and New Researcher
Written by: Paige Gilbank
“I am a Translational Research student (MHSc candidate) who is transitioning from my role as a parent advocate for [family involvement] in neurodevelopmental research, to a researcher in neurodevelopmental research, hopefully. I’m in a transition phase of my life,” Connie Putterman says thoughtfully, fitting decades of experience and future aspirations into two short sentences.
Connie comes to the Translational Research Program (TRP) with an untraditional career path, a unique perspective and a passion for patient and family involvement in research.
“My advocacy is about me wanting other people to see what I see. And that is: there’s so much to gain by being involved in research. Because you’re not just helping your child, you are helping yourself and helping others. It’s sort of a win-win? For me, it was and continues to be.”
Connie Putterman’s son was diagnosed with autism at an early age. Connie went from a career in business, working for the Ontario Centres of Excellence program, to a full-time mother and manager of her son’s care and participation in autism research.
“I took my personal journey, which was having had a child with autism diagnosed at a young age, and getting involved in research activities very soon after he was diagnosed… I had a journey that resembled a career path of sorts because I began as a participant in research and then moved into various advisory roles. What I realized through this journey is that I became an expert in navigating uncertainty. And I think you have to be, but you don’t necessarily want to be when you first get a diagnosis. You go ‘what do I, how do I manage this?… How do I help my child?’ And you continually ask yourself: how do you live in that uncertainty and navigate through it to get the best help for your child?”
“I realized over many years that it was so beneficial to be involved in research as a parent participant, as a parent advisor, as a parent representative on committees, as a parent who’s brought in to be co-lead and chair a national Knowledge Translation (KT) committee. As I got further along, I had this experience participating in research that benefited me so much. Then I decided that I really wanted to promote the benefit to other families to get involved in research.”
Connie has always been interested in science and being involved in autism research only fueled her drive to get more involved.
“…how can I be more a part of the team? I really wanted to understand how research works. And the only way to do it is to study it. So, that’s why I came to study at the TRP at the University of Toronto. And I’m so glad I did. Now, I have a different perspective on the research process and translational thinking, and I’m hoping to change the way autism science research thinks about translation – to have more impact.”
The TRP focuses on how research can be designed with impact in mind, discussing the values but also the challenges of patient-centered research. The program teaches the translational landscape from discovery to application and examines the valleys of death that draw out the innovation process. Connie’s experience in her professional advocacy highlights the difference in hypothetical problem-solving and the complexities of these challenges in the real-world, where the problems don’t exist in isolation.
In her second year, Connie’s already using what she’s learning at TRP in her role as Parent Advisor. She sees the way research has always been done and interjects the questions of “how can we consider the impact?” and “how can you reframe the question in a way that takes into account some of the patient needs?” into discussions with researchers. For many in these circles, it’s a different way of thinking.
“I’m a seasoned parent, but I’m also a new researcher. I bring that dual role and it’s really interesting because sometimes I feel conflicted. You need to include families but then there are certain instances where it’s pretty impossible. We are currently trying to figure out how to do that in our Capstone project.”
Connie’s second-year Capstone project focuses on understanding the needs of refugees in Toronto who are awaiting status and need to access health services. She’s working in a team with three other TRP students with interdisciplinary backgrounds. Ibrahim Alshaygy is an orthopedic surgeon from Saudi Arabia, completing a fellowship in Toronto. Christina Beharry is a recent graduate of a Bachelor of Science, specialized in Psychology and Graduate Certificate in Autism and Behavioural Science. Jonathan Lee is a recent graduate of a Bachelor of Health Sciences. Together, they use their unique perspectives in creative brainstorming to drive the research forward with the patient need at the center of their project.
Throughout this process, Connie has learned that we don’t always truly understand the problem, and that research can mean more than searching for a cure or treatment. When she began her first year of TRP, Connie wondered: “how do you get to the research question?”. She wanted to know how to start off a truly meaningful project with the appropriate research question. Now, Connie describes her Capstone project as a needs analysis, focusing on understanding the complexity of the problem-space. Their research question revolves around discovering the needs of refugees, setting the stage for future work to address them.
Like most students nearing graduation, Connie’s thinking of her own next steps. Of how she’s going to take her experience at TRP to impact neurodevelopmental research and her recent work in Family Engagement in Research (FER). As a Parent Advocate, Connie continues to see a need for families engaged in research to have an appreciation of the scientific method and process and in turn, for the researchers to better integrate the family’s perspective. Connie sees the need for better processes, training and communication between researchers and parents as a way to fill the gap between them and allow for better engagement in research. She recently created a FER course through a joint partnership with Kids Brain Health Network, McMaster and Canchild in Hamilton that is a first step toward achieving better partnerships for families and researchers.
During the remainder of her Capstone and post-graduation, Connie will also prioritize developing her qualitative research skills. By better understanding the research perspective and incorporating that into her role as a parent advocate, Connie hopes to be that bridge she was looking for.
“Maybe that will be my role when I’m done… By understanding both sides, maybe that’s where I fit in.”
Learn more about Connie and her advocacy work.
Rawtalk Podcast #57 Autism – Unraveling the Spectrum
TedXTalkYorkUSalon – Finding your WAZE