Pictured: Kaenna Dorion, Jack Hickmott, Christine Aiken
“Being a part of the ABLE team and participating with the iNeuron team, I felt empowered. It was engaging and uplifting. It gave me hope, and I felt the genuine interest shown to those with lived experience…this surpassed my hopes. The posters and poster presenters were a highlight. I learn so much, which, of course, helps me in my ongoing efforts to live well with my vascular dementia. I can’t wait for our next meeting.” – Christine Aiken, ABLE member
“Interacting with ABLE members was a highlight of this year’s iNeuron Annual Symposium. I cherished the chance to share my work with patients and caregivers; receiving feedback from ABLE members was an invaluable and grounding experience that refined my work and communication skills. Science is at its best when researchers and stakeholders collaborate to exchange ideas and perspectives, ensuring that lab work is purpose-built for the real world and meets the needs of the people we aim to assist. Thank you Team ABLE for all the work you put in to attend the symposium, to share your stories, and to listen to ours. ” – Jack Hickmott (iNeuron Trainee)
Learn More!
- Team iNeuron Tip Sheet ABLE members created a resource that consolidated suggestions on ways researchers could better communicate research knowledge to people with lived experience.
Team iNeuron Infographic ABLE team members developed a plain-language infographic describing the structure and objectives of the iNeuron pillars. The infographic was designed to be accessible to people with lived experience (e.g., plain-language use, accessible icons, etc.), and researchers were encouraged to utilize this resource (e.g., during presentations) to better communicate where their research fit within the broader iNeuron project.
Team iNeuron Guidebook ABLE team members created a guidebook to support ABLE members’ understanding of the iNeuron project. It includes an overview of iNeuron aims, descriptions of each pillar and cross-cutting theme, including the researchers involved and their roles, and a glossary that provides plain language definitions of relevant scientific terms. The guidebook is a living document that will continue to be updated as the iNeuron project progresses.
“ABLE’s involvement in this year’s annual symposium played an integral role in fostering team engagement and advancing knowledge mobilization. The ABLE poster award gave ABLE members a meaningful opportunity to learn about the research underway in Team iNeuron, while also allowing our Highly Qualified Personnel to build skills in communicating their work to diverse audiences. These initiatives illustrate the importance of patient engagement, and we are excited to see our collaborations continue to grow with the unwavering contributions of the ABLE team“ – Carol Schuurmans, Nominated Principal Investigator
The Advisory Board of Lived Experience of Stroke, Epilepsy & Dementia (ABLE) – iNeuron Annual Symposium Poster Competition
The Advisory Board of Lived Experience of Stroke, Epilepsy & Dementia (ABLE) is composed of individuals from across Canada with lived experience of dementia, stroke, and epilepsy, including people diagnosed with these conditions and friends and family care partners. They are part of iNeuron, a Canadian-led, international, interdisciplinary research project focused on the development of novel gene therapies to combat incurable neurological disorders. ABLE members are provided with training and ongoing support to be engaged as co-collaborators in research – not study subjects.
For the second annual iNeuron symposium (January 21 – 23, 2025), ABLE members designed a poster award to recognize a trainee who tailored their messages to diverse audiences (e.g., people with lived experience).The ABLE award was intended to promote trainees’ skills in communicating with non-academic audiences, provide opportunities for them to connect with ABLE members and bring awareness of a tip sheet for presenting to non-academic audiences, co-developed by ABLE members.
ABLE members developed a rubric for poster judging and the assessment criteria included: (1) Use of Plain Language; (2) Minimizing Acronyms and Jargon; (3) Accessible Fonts, Colors, Text; (4) Inclusive and Respectful Language; (5) Clear and Slow Speech; (6) Good Body Language; (7) Welcoming Feedback; (8) Enthusiasm and Involvement. As some of the ABLE members were new to the role, new members were paired with more experienced members to ensure the new members felt comfortable during the poster judging. Each pair of judges (2 per pair, 4 in total) was assigned a set of posters to review and were provided with clipboards and paper copies of the rubric. Posters were evaluated by the judges during dedicated poster sessions where trainees had the opportunity to present their work. When the judges were finished evaluating their posters, they submitted the scoring sheets to an ABLE trainee who tallied the scores. The winner of the poster award was announced by two ABLE members at the end of the meeting during closing remarks.
Jack Hickmott, a postdoctoral fellow at the University of Toronto, received the ABLE award for his presentation “Definitively Detecting Induced Neurons in a Mouse Model of Ischemic Stroke”. Jack was offered an award of $500 (which he donated back to ABLE!) and was invited to present his research to the ABLE members and leads at a future ABLE program meeting. As one of their objectives, ABLE continues to prioritize active inclusion in annual iNeuron conference programs, particularly focusing on trainee engagement.
ABLE members valued the experience of interacting one-on-one with trainees and hearing about their research. They had time to ask questions and connect with trainees to share their own lived experience. They appreciated learning about research and sharing trainees’ enthusiasm for their work.
A major challenge of this award was the lack of registration prior to the annual symposium. Few trainees registered in advance, likely due to unfamiliarity with ABLE, competing responsibilities, or missing the email notice. Ultimately, the ABLE team attached a half-page flyer to all poster boards so trainees would see it when displaying their posters. This allowed anyone to participate or opt out. As a result of this, trainees who previously registered for the award had the opportunity to review and prepare their presentations with the rubric and tip sheet.
Lived experience brings essential insight to health research, education, and policy. Engaging people affected by illness and those who support them enriches understanding, challenges traditional knowledge hierarchies, and fosters more inclusive and person-centered approaches. For trainees, direct interaction with people with lived experience (PWLE) cultivates empathy, critical thinking, and ethical awareness. ABLE participants collectively feel that tools like poster presentations create impactful, teachable moments that center lived experience as a valued form of expertise.
Team Members Involved: Jennifer Bethell, Carrie McAiney, Julia Jacobs-Levan, Ellen Snowball, Katelyn Wheeldon, Netanya Winterburn, Catherine Anne Kelly, Christine Aiken, Cyndi Barron, Derek Payne, Duane Froese, Ed Mitchell, Karen Myers Barnett, Karli Tanner, Laura Stronghill, Meghan Lau, Paul Lea, Sandy Morter, Skylar Yanke, Susan Wulf, Torie Robinson, Kaenna Doiron
Institutions/Organizations Involved: University Health Network, Toronto Rehabilitation Institute (Bethell), University of Waterloo (McAiney), University of Calgary, Hotchkiss Brain Institute (Jacobs Le Van)
Making Research Matter for Families - Dr. David Weinstein
Dr. David Weinstein and his team studied a rare disease in children called Glycogen Storage Disease Type 1a. Children with this disease need corn starch often to manage their condition. Talking to parents, they realized that children with this condition needed a treatment to help them stay healthy throughout the night without needing to wake up every few hours to take their medication. Dr. Weinstein’s team worked with families to find a solution. They created a slow-release treatment that was approved. This made a big difference in the children and families’ lives.
Dr. Weinstein’s team also asked patients and doctors what they thought were the most important things to study about this disease. They worked together and came up with a list of the most important things to research.
Ultimately, Dr. Weinstein and his team listened to families, identified and developed a treatment to improve the quality of life of patients and their families, and asked everyone what should be studied next. This teamwork made things better for the children and their families, and helped researchers know what to focus on.
Read articles:
Research priorities for liver glycogen storage disease: An international priority setting partnership with the James Lind Alliance
Can patients be involved in preclinical research?
Engaging Patients in Ph.D Ovarian Cancer Research - Emma Gerber
As an ovarian cancer research trainee, I know the important statistics and molecular mechanisms related to this disease. However, I lacked a human connection to what I was studying. After learning about patient engagement, I recognized its potential value, but did not know how to begin engaging patient partners in my research. Thanks to support from my university and Ovarian Cancer Canada’s Patient Partners in Research group, I was able to connect with a panel of patient partners with lived experience of ovarian cancer to discuss engagement opportunities in my PhD thesis project. The prospect of engaging with patients in discussions excited me, and the panel’s enthusiasm was contagious. Based on their lived experiences they highlighted the importance of identifying minimally invasive biomarkers to guide ovarian cancer treatment. Importantly, input provided by patient partners enhanced my planned studies. For example, comparing biomarkers of interest at initial diagnosis and in a recurrent setting was suggested, which had not been originally included in my research plan. Embarking on this journey of patient engagement as a graduate student has been immensely rewarding. As someone without a personal connection to ovarian cancer, this experience has transformed my research, infusing it with a sense of grounding and humanity. Amidst the challenges of academic research, this has been a powerful source of motivation. Having had this experience early in my career motivates me to pursue future research collaboratively with those who have lived experience of the conditions being studied.
Sepsis Canada and the National Preclinical Sepsis Platform
The National Preclinical Sepsis Platform (NPSP) provides an example of how patient engagement can shape preclinical laboratory research. The NPSP includes patient partners who are identifying new perspectives and priorities for sepsis (severe infection, which can lead to organ dysfunction) research. Though still in the early stages of their project, through attendance at laboratory meetings, patient partners have identified several clinically relevant outcomes that would be of interest to measure in animal experiments.
To take a thoughtful and tailored approach, the group held an icebreaker/ non-technical session to discuss the NPSP goals, the experimental model and patient partner questions, and worked as a team to co-develop terms of reference.
Additionally, the team has worked together on several grant applications to fund a priority-setting exercise (to identify a patient-important question that could be assessed in a sepsis mouse model), co-conduct of a preclinical systematic review to address this question, and eventually co-development of a laboratory experiment to further study the identified question of interest.
By working with patient partners from the start (e.g., grant/project development) to identify shared goals, the team believes this will have important downstream impact, by ensuring their research is relevant to the patient community.
Public Involvement in Research Funding Processes - Parkinson's UK
Parkinson’s UK is the largest European charitable funder of Parkinson’s research, granting approximately £8m annually in medical research, both clinical and non-clinical. Parkinson’s UK believes that the feedback from people affected by Parkinson’s makes a difference and improves the way the charity does things for people affected by Parkinson’s. Involving people living with Parkinson’s in research funding decisions lets the Parkinson’s community know that they are being listened to and that they have a say in the research being funded by the charity.
Parkinson’s UK has involved lay grant reviewers in its funding decisions for almost 20 years. People affected by Parkinson’s have also been involved in shaping the charity’s research strategy, via the Research Strategy Board. Through reflective practice and evaluation, this work continues to improve, serving the mission of Parkinson’s UK to improve life for everyone affected by Parkinson’s.
Parkinson’s UK believes the value and strength of the lay grant reviewer role is that the personal experience of living with Parkinson’s is brought to the research grants funding process. Through consultation and refinement, Parkinson’s UK has developed approaches and processes to support meaningful involvement in grant funding. This has included training courses, specific lay grant reviewer review forms – tailored to the perspective of people living with Parkinson’s – and more detailed plain English sections of grant applications so lay grant reviewers can fully understand the applications.