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
#UofTMed TRP Student Profile – Sydney Taylor
MHSc Translational Research Candidate, 2nd year
Why Faculty of Medicine?
I have always had an interest in medicine and healthcare. The Faculty of Medicine at UofT offers an array of programs that best suit my graduate needs and provides support for me to further develop my professional skills. Two of the largest influencing factors for me were the reputation of the university and the numerous opportunities for collaboration amongst the students within the faculty.
Why the Translational Research Program?
After completing my Bachelor of Kinesiology, I knew that I wanted more control over the direction of my graduate degree. The TRP provides us with the tools we need to develop and complete a collaborative capstone project, as well as challenges us to approach problems within health care differently. We are exposed to the numerous facets within the health care ecosystem, which provides me with the ability to further develop areas of interest and increase my understanding of how the system can be changed.
Current Research Experience
Four months as a research analyst at the Toronto General Research Institute and previous four months inputting patient data during a student work term placement at a biomechanics lab.
Future Education Plans and/or Career Goals
One of the main reasons I applied for the TRP was to pursue my passion regarding women’s reproductive health. Upon completing my graduate degree, I will continue to pursue opportunities within this space. My personal experiences combined with the learnings from the program have increased my awareness of the current gaps within this field and the possibilities to address these gaps. My overall goal is to improve the experience of women during their reproductive years.
Written by: Paige Gilbank
“Canada is a leader for the development of innovative health technologies. However, in Ontario, there are no widely accepted, consistent pathways or processes for implementation and many seemingly great innovations fail to penetrate our health care system due to its complexity and lack of transparency.”
This fundamental gap called Ahlexxi Jelen and Robby Spring into action. Throughout their research careers, they saw a need for different approaches to translate research findings that had a practical impact in health care. In Fall 2016, Ahlexxi and Robby began their Master of Health Science in the Translational Research Program (TRP). The TRP is a two-year, professional Master of Health Science degree that encourages students to integrate their domain expertise with experiential learning and translational thinking to advance problem-solving designs in medical and health sciences.
Ahlexxi and Robby share over 20 years of research experience and shortly after completing their degree, they transitioned from their roles as laboratory managers at the Hospital for Sick Children and Baycrest, respectively, to forge new paths as part of their career aspirations within the health care system.
“The lack of clarity and transparency for implementing innovative health technologies in Ontario creates a system that is difficult to understand and navigate. This poses a major challenge for health innovators who lack knowledge about the structure and function of the system and pathways for commercialization.”
Ahlexxi and Robby recognized the complexity of health care innovation in Ontario and identified that there was a need to streamline the process to be more understandable. This sparked their interest to develop a solution that would demystify the implementation process for innovative health technologies in Ontario.
This idea became a reality once they began their TRP capstone project. The capstone project is the second year focus and a primary requirement as a graduating student in the TRP. Students embark on a self-directed capstone project where they apply their newly developed knowledge and tools to explore a health care problem. Using a Co-Translational FrameworkTM developed by the program, students take on a human-centred design approach to innovate within health care to mobilize this knowledge into practice.
The duo began their capstone using a translational thought strategy to leverage the knowledge and insights of subject matter experts and key opinion leaders in the field. Through their initiative, they interviewed and consulted numerous experts across the pillars of health, gaining perspectives from government, academia, industry and health care. From these discussions, Ahlexxi and Robby developed a framework and iteratively constructed the prototype in a co-creative manner. At their final capstone presentation, Ahlexxi and Robby showcased their process and product: an informational resource designed to help guide health innovators through the complex processes and pathways for implementation of innovative health technologies in Ontario. The tool is a free accessible resource available to the health care community and acts as a “choose your own adventure” style based on the specific context of the innovation. In December 2018, Ahlexxi and Robby launched HIIO (Health Innovation Implementation in Ontario).
“The Ontario health care system requires a framework to support health innovators navigate the innovation ecosystem in order to improve decision-making among health innovators, engagement among stakeholders, and sharing and accessing information and services.”
To validate the content and function of the tool, the pair sought expert feedback from the health and innovation community. Since graduating, Ahlexxi and Robby have continued to execute their vision and collaborate with field experts to refine the resource into a meaningful tool for health innovators and other key players in the community.
“Through HIIO, we aim to support Health Innovators in Ontario by providing the information and resources needed to navigate the complexities of our health care system. Using a phased approach, we have highlighted the processes and pathways for implementation and offer comprehensive insights throughout the innovation lifecycle — from idea generation to diffusion.”
This project was not without hurdles. While the Co-Translational FrameworkTM is displayed as a step-wise approach, the practice of applying it is non-linear. There were many pivots, challenges and iterations throughout their journey; Ahlexxi and Robby share some of their lessons learned:
- “[Your] solution is only as good as your understanding of the problem.”
- “Work with someone you’re compatible with and who shares a common goal and vision.”
- “Be flexible and learn to adapt within your environment.”
Ahlexxi and Robby had a vision to create a meaningful solution that would enforce and benefit the health innovation community. Both entered the Translational Research Program determined to make an impact, and both moved on with their degree and a dynamic set of tools and expertise to make it happen.
Written by Craig Madho
The healthcare landscape has always existed with two very clearly defined pillars: researchers and practitioners. While they exist in different capacities in the hospital setting, the roles can always be reduced down to one of two binary states. As the body of research in Toronto began to grow, the need for a third pillar rapidly emerged – not one that exists parallel to researchers and practitioners, but one that bisects them and creates a bridge for moving research into practice: a translational researcher.
As a student at the U of T, I took a non-linear path from my bachelor’s degree to my master’s degree at the Translational Research Program (TRP). I completed my BSc at the University of Toronto in the Department of Pharmacology and Toxicology as a specialist student. Being in the specialist program, I had the opportunity to undergo a Professional Experience Year (PEY) working with an industry group in the field. I was fortunate to get a PEY at the Applied Health Research Centre (AHRC) in St. Michael’s Hospital as a Research Assistant where I helped manage phase 2-4 clinical trials both nationally and internationally. During my time at the AHRC I was given several opportunities to see how high impact research was being reduced to practice and I was given the chance to help facilitate that movement. That was the moment I knew my interests were not in discovery research, but in how to best utilize that research to improve patient outcomes.
When I returned to finish my BSc, I quickly started searching for opportunities to learn more about how to move research into practice. I read about how business circles create customer profiles for identifying target customers and understanding markets; I looked at how engineers solicit design specifications from users when developing devices; I immersed myself in knowledge translation literature to understand how these circles were approaching moving healthcare research into practice at the patient level. Taking this a step further, I worked in a health tech software development start-up where I was able to learn and practice these skills directly.
I was considering graduate programs as the next step in my career development when I learned about the TRP. Reading about the TRP, I realized that this program was a platform where these interdisciplinary ideas were brought together in the healthcare lens. I see this nexus as being invaluable because, at its core, these concepts involve building healthcare interventions from the perspective of the end-user, which in this case is the patient. This was exemplified by one of the capstone projects, the Timely Project that tackled the lengthy wait times for mental health service access at U of T. Seeing the impact of this project convinced me that the TRP would be a good home for my curiosity. This is why I joined the TRP: to be on the forefront of building a healthcare system that is authentically patient-centric and is accessible to everyone.
My capstone project, which is the professional masters equivalent of a thesis project, looked at how to improve cancer outpatient nutrition by assessing nutritional resources and understanding how to revitalize them from the context of patient needs. My capstone partners (Kathleen Mounce, Razan Bouzeineddine, Julia Antolovich) and I had the pleasure of working closely with 3 key cancer patient resources in Toronto; ELLICSR, Wellspring, and Gilda’s Club; as well as several cancer patients that access these resources. Through our work, we identified gaps in programming that can be addressed by these groups in order to help deliver education on maintaining a proper diet as a cancer outpatient, which helps not only reduce the physical side effects of chemotherapy but also helps reduce long-term recurrence of cancer.
In addition to my capstone work, I applied a user-centric philosophy to several of my extra-curricular activities. During my time as a student, I was one of the co-presidents of the Institute of Medical Science Students Association (IMSSA). Outside of IMSSA, I was the co-founder of the IMS Peer-to-Peer Mentorship program, a member of the Student Alumni Faculty Engagement Committee, lead organizer of the Pillars of Health (an annual TRP networking event) committee, and a lead on the UofT Talks organizing committee. Through my work with these various student groups, I strived to instill the importance of co-creating with the target users in mind to create an experience that is both valuable and meaningful. For my work with these groups, I have been graciously honoured with the 2018 Gordon Cressy Student Leadership Award, the inaugural Graduate Community Development Fund Award, and the Roncari Book Prize.
Now that my time as a student in the TRP has come to an end, I am very grateful for the mentorship and opportunities given to me. I plan to take my experience and learnings into a career as a healthcare innovator, knowledge mobilizer, and translational researcher working with the various groups I met as a master’s student. My current projects include working with the National Initiative for the Care of the Elderly (NICE) as a knowledge broker on various innovation projects related to health issues in Toronto’s aging population, such as opioid use in seniors, as well as supporting NICE in their new Intergenerational Homeshare Project, which seeks to break down generational barriers to provide affordable housing for students while also tackling big issues like senior social isolation, aging in place, and ageism. In addition to my work with NICE, I am working with the editorial team at The Local, a hyperlocal healthcare magazine run out of UHN OpenLab, to tell the story of population health data and highlight health gaps in Toronto’s communities. As research moves forward, I hope to continue to work closely with the healthcare system to ensure that we are able to deliver the best possible patient-centred care.
See Craigs article with The Local’s series Unsung Heroes: Ghirmai the Interpreter and connect with Craig on LinkedIn or Twitter.
“One year of TRP done! It’s been busy and eye-opening.”
Meet Kathleen Camaya, a registered nurse (RN) in the Pediatric Intensive Care Unit (PICU) at the Hospital for Sick Children. She’s been working at SickKids for 9 years and is entering her second year in the Translational Research Program (TRP) at the University of Toronto.
Now that you’ve completed your first year, what are your thoughts?
“From day one, Rich (TRP Instructor) and Joseph (TRP Director and Instructor) encouraged us to network and get out of our comfort zone. I feel like I finally got what they were talking about at the end of the year.”
Change doesn’t happen in isolation, and the TRP encourages students to cross between the silos of healthcare to form meaningful connections that can lead to interdisciplinary collaborations. The program aims to not only instruct, but inspire students to drive change in their communities.
What drew you to this program?
“I didn’t want a theory-based program. I wanted something hands on and TRP sounded like a program that was unique and forward thinking. I liked that it was open to various fields in health care with a focus on the patient or end user.”
The TRP is more than just courses or projects, it will change the way you think about health-related problems and gaps. This two-year, course-based professional degree is designed for highly motivated students of diverse professional and academic backgrounds to advance problem-solving designs in medical and health science contexts. Through flexible coursework and hands-on leadership experience, students are provided with analytical tools and frameworks to help build professional translational researcher skills.
What was a memorable experience from your first year?
“Throughout the year, we had many discussants speak in the Foundations in Translational Research course about a variety of topics spanning the pathway from bench to bedside and influences on the stages of research.”
Among the first year courses, the MSC1000: Foundations in Translational Research course aims to provide students with a high-level perspective of the research, discover, translation and commercialization landscape by fostering discussions with guest speakers who have real-world experience in these areas.
“One of the guest speakers that inspired me was UHN’s OpenLabs, a design and innovation shop dedicated to finding creative solutions to problems in health care. I was very interested in their approach to health care barriers and the public rounds they held every Tuesday. Following that class, I attended an OpenLabs rounds and met Adeline Cohen, who was working on the Toronto Rehab Urban Farm project. I connected with her after rounds and through our conversation, I discovered our shared interests in nutrition and the need to improve nutritional education within health care.”
Kathleen, who had extensive experience at the bedside, was able to make a connection that fostered the opportunity to collaborate on a research project in an intersection of their passions.
“…we both share an interest in expanding green space in healthcare facilities. I expressed my interest in her Urban Farm project and she asked me if I’d like to help her out. I volunteered my time to help out with an extensive literature review for her paper. In acknowledgment of our collaboration, Adeline will put my name as one of the authors in her paper. This is the first paper that will have my name on it! Adeline has been awesome to collaborate with and I am happy to help her out with her project.”
Any final reflections on your first year?
“I wanted to thank both Rich and Joseph, for opening up great opportunities for TRP students. It is exciting for me to be able to network and meet people with similar interests and to work on a project together. Following their advice to network and collaborate has really paid off! At first, I was a little unsure of how to go about networking but attending sessions, such as Open Rounds, has helped me to gain confidence in collaborating with others.”
Kathleen’s experience is one of the many stories of TRP students embedding themselves in their community or reaching out beyond their niche to drive change. As Kathleen enters her second year, she’ll be able to draw on these lessons learned and apply her skills to her Capstone project and future directions.
Written by: Paige Gilbank
One. Two. One. Two.
This was the mantra that was running through my head at every uphill turn or gust of wind adding resistance to my ride.
My gaze was glued to the two feet of road immediately ahead of me. I focused on the turn of my bike wheels, determined to ignore the lactic acid building up in my leg muscles.
And then a cyclist would pass on my left, with a yellow flag shooting straight into the air from their back wheel, and I was reminded why I was doing this ride. I was reminded why I wasn’t going to stop.
The Ride to Conquer Cancer was the most challenging and worthwhile weekend of my life. The two-day, 220km bike ride from Toronto to Niagara falls raised 18.3 million dollars for the Princess Margaret Cancer Centre this year. If you asked me what I would be doing this summer when I began my graduate studies in University of Toronto’s Translational Research Program (TRP), I would not have answered with “a cycling challenge to raise money for cancer research”. I entered this program wanting to learn how to impact patients without research results getting lost along the road to application. I thought we’d learn to navigate the translational research landscape, I didn’t realize we’d do so on a bike.
On Saturday morning, at 8:00am, 4,555 cyclists were crowded around the start line ready to begin this journey. Riders from all over united with the common goal to conquer cancer in this lifetime. Researchers, clinicians, professionals, students, and cancer survivors all became cyclers riding for a cure. Over two days, we tackled the rolling Halton Hills, the steady incline of the escarpment and the windy flats of Welland, and coasted toward that long-awaited finish line along the Niagara river. There are cancer survivors and their families sitting beside the route, cheering you on. There are cancer survivors riding along with you, with their yellow flags as identifiers, powering through.
This was the second year that the TRP Disruptors, a team of TRP faculty, students and friends, participated in the Ride to Conquer Cancer. This year we grew to 11 team members, including several new first year students, including myself. Leading up to the ride, the team supported one another in our training, preparation and fundraising efforts. Many of us had never done a cycling ride before, we didn’t know what gear we needed or how to start training while we were still treading through snowy streets. But with Ride-veterans providing tips and tricks, and coordinating team training sessions, we were ready for the ride weekend.
We started the race with one rule: no one rides alone.
Everyone had a buddy, or several, nearby at any given point. At every rest stop, teammates were there to cheer you on, to congratulate you on how far you’ve come, and to remind you that you can do this. The team pushed through hurdles: physical aches and mental fatigue, flat tires and broken gears. We hit walls and we climbed them, together. And on Sunday afternoon, at 4:45pm, we crossed the finish line the way we started, together.
We’ve conquered the ride, but our fundraising is ongoing. This year we’ve raised $24,789 so far. Combined with last year’s donations, TRP faculty and students have raised over $51,500 for cancer research. To help us reach this year’s goal of $27,500, click on a teammate still working toward their goal using this link.