a podcast for practical patient engagement <br/><br/><a href="https://asperusual.substack.com?utm_medium=podcast">asperusual.substack.com</a>
As PER Usual
Claim This Podcastby Anna Chudyk, Bryn Robinson and Roger Stoddard
5.0(2 reviews)
46 episodes
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Podcast Overview
a podcast for practical patient engagement <br/><br/><a href="https://asperusual.substack.com?utm_medium=podcast">asperusual.substack.com</a>
Language
🇺🇲
Publishing Since
12/13/2022
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Recent Episodes
December 2, 2025
S3E9.5 - onePERspective
<p><strong>Meet our guest listener</strong></p><p><strong>Sasha Kullman</strong>: Sasha is a PhD student in the <a target="_blank" href="https://umanitoba.ca/pharmacy/">College of Pharmacy</a> at the <a target="_blank" href="https://umanitoba.ca/">University of Manitoba</a>, supervised by <a target="_blank" href="https://www.linkedin.com/in/anna-maria-chudyk-59051630/?originalSubdomain=ca">Dr. Anna Chudyk</a>. She holds a master’s degree from the <a target="_blank" href="https://umanitoba.ca/kinesiology-recreation-management/">Faculty of Kinesiology and Recreation Management</a> at the same institution, where her research focused on health psychology, health promotion, and patient engagement in research. Funded by a <a target="_blank" href="https://www.nserc-crsng.gc.ca/students-etudiants/pg-cs/cgsd-bescd_eng.asp">CIHR Canada Graduate Scholarship</a>, Sasha’s doctoral work continues to center on participatory approaches, involving patients and their families in research designed to enhance healthcare experiences.</p><p><strong>Episode Transcript:</strong></p><p>Anna Chudyk:</p><p>Hi everyone! Welcome to onePERspective — a bi-weekly segment where a featured guest shares their key reflections on the latest episode of asPERusual, my podcast all about practical patient engagement in research. I’m your host, <a target="_blank" href="https://umanitoba.ca/pharmacy/faculty-staff/anna-chudyk">Anna Chudyk</a>.</p><p>Today’s episode is a special one in that it’s our final asPERusual of 2025. We’ll be taking a short break from recording as I get settled into coordinating a new course at the start of 2026. Once that’s underway, we’ll be back — with a brand new season launching in mid-to-late winter 2026.</p><p>Before we wrap up the year, I’m thrilled to be joined once again by <a target="_blank" href="https://scholar.google.ca/citations?user=DAAKji8AAAAJ&hl=en">Sasha Kullman</a>, a doctoral trainee in <a target="_blank" href="http://www.patientengagementinresearch.ca/">my lab</a>. Sasha, I’m really looking forward to hearing your key takeaways from <a target="_blank" href="https://asperusual.substack.com/p/s3e7-practical-tips-for-engaging">Season 3, Episode</a> 9 of asPERusual, which featured <a target="_blank" href="https://www.linkedin.com/in/dr-sharon-hj-hou-96089024/"><strong>Dr. Sharon Hou</strong></a> (a psychologist and assistant professor at <a target="_blank" href="https://www.sfu.ca/">Simon Fraser University</a>) and <a target="_blank" href="https://www.linkedin.com/in/laesa-kim-a3904a27/"><strong>Laesa Kim</strong></a> (a parent partner and family liaison at <a target="_blank" href="https://www.bcchr.ca/">BC Children’s Hospital Research Institute</a>).</p><p>Sasha Kullman:</p><p>Hi everyone, and welcome back to this episode of <strong>onePERspective</strong>. I’m Sasha, a doctoral student at the <a target="_blank" href="https://umanitoba.ca/">University of Manitoba</a>, located on <a target="_blank" href="https://treaty1.ca/">Treaty 1 Territory</a> here in Winnipeg— and if you’ve listened to these mini episodes before, you’ll know that I’m also Anna’s student.</p><p>Today, I’ll share my key learnings from our last full episode of <strong>As PER Usual</strong> and reflect on how I can apply what our guests shared to my own research with youth and families.</p><p>In our last episode, we heard from <a target="_blank" href="https://www.linkedin.com/in/dr-sharon-hj-hou-96089024/"><strong>Dr. Sharon Hou</strong></a> and <a target="_blank" href="https://www.linkedin.com/in/laesa-kim-a3904a27/"><strong>Laesa Kim</strong></a>, who discussed their <a target="_blank" href="https://www.child-bright.ca/">CHILD-BRIGHT</a>–funded <a target="_blank" href="https://www.child-bright.ca/child-bright-pain-pathway">Pain Pathway Project</a>, which supports community pediatricians in managing pain and irritability in children with severe neurological impairments. They highlighted how involving families from the start strengthens research design and implementation, and how trust, co-creation, and reflective collaboration lead to more compassionate, accessible, and effective care.</p><p>What stood out most from this discussion was Sharon and Laesa’s description of the <strong>parent monitoring board</strong>, how it was integrated into Phase 2 of their implementation project, and the impactful role Laesa played as both a leader and communicator. She moved fluidly between the board and the research team, supporting the engagement process and shaping many other aspects of the project.</p><p>Because they’ve worked on a team that collaborates closely with parent and family partners, Sharon and Laesa were able to share not only practical tips, but also guidance about the spirit of engagement; how <strong>it functions as a research philosophy rather than a box to check.</strong></p><p>Starting with the practical tips, one that I know I’ll apply in my own work is the importance of creating a <strong>“</strong><a target="_blank" href="https://jmir.org/api/download?alt_name=periop_v4i2e26597_app1.pdf&filename=b6535be7647a7fd2dbda39575b6d8386.pdf&_gl=1*14zsy2i*_gcl_au*MTk2NDIyMDcyNC4xNzYxOTI3NDYy*_ga*MTcwMTgzNTY0MC4xNzMwMjE5NDE5*_ga_YP0XNYBWWC*czE3NjQ2MDkzNTckbzIkZzEkdDE3NjQ2MTAzMDIkajYwJGwwJGgw"><strong>terms of reference” document</strong></a> (or a “working together agreement,” as we’ve called it in previous episodes). This helps everyone understand their roles, and gives patient and family partners a moment to shape the type of role they want to have. I just finished writing the major proposal for my thesis, and including a meeting to co-create a terms of reference was one of the steps I outlined. Hearing Sharon and Laesa reinforce its value—alongside what I’ve heard from my supervisor and the partners I’ve worked with—makes me even more confident in prioritizing this step.</p><p>I also appreciated Laesa’s reflections on communication and the need to provide multiple ways for patient and family partners to share feedback. We often think of engagement as a big-picture process, but in practice, <strong>I see it as being built from many small actions that occur across the entire research journey.</strong> Each action—whether it’s sharing an email update or asking for input—is a choice about how we want to relate to our partners. When all of these small choices accumulate, they form the larger engagement process.</p><p>Finding a communication balance is something I’m still learning myself. Laesa talked about wanting to keep partners updated, even when there’s no immediate task for them, while also being mindful not to overwhelm people who are juggling full lives outside the research project. My takeaway is that there isn’t one “right” approach—communication should be decided together with the partners you’re working with. But, when unsure, <strong>sending the email is usually better than holding back</strong>. Sharing information puts the decision in the hands of patient and family partners about how involved they want to be, instead of us making that choice for them. And when partners know they have flexible ways to offer feedback, they’re more likely to share what they can, when they can—while also feeling permission to step back when needed.</p><p>Thinking about all of these small steps and interactions makes it clear how valuable it can be to have someone leading engagement who has personally experienced being a patient or family partner. I wanted to highlight <strong>the significance of Laesa’s role</strong> as the staff member guiding the parent monitoring board. Engagement is often facilitated by a researcher or student, and while that can certainly work well, having a patient or family partner in this leadership role brings something unique. Laesa understood both the research context and the lived experiences of the parents involved. She could support communication, relationship-building, and trust in ways that might not have emerged otherwise. <strong>She helped ensure that those small steps of engagement were intentional and meaningful,</strong> that communication wasn’t missed, and that partners felt welcome to raise feedback or concerns. She could also connect with parents on a personal level as another parent of a medically complex child—something that likely strengthened rapport in important ways.</p><p>In my own research, I’m hoping to draw on this by co-leading engagement sessions with a patient or family partner. I know how valuable it is to have someone who can bridge perspectives, surface ideas I might never think of, and help me find more inclusive and responsive approaches.</p><p>Another important takeaway was the development of a <strong>glossary and a visual diagram</strong> to help patient and family partners navigate the research protocol. It can be so easy for researchers to take specialized terminology for granted, especially when we’re deeply embedded in a field. Glossaries make research more accessible, and I think that accessibility directly improves the quality of feedback partners can give. I’m already thinking about where I can build this into my own work, especially as I dive further into implementation science—which, if I’m being honest, has already left me spinning around more than once with all its terminology.</p><p>I also want to reflect on how Sharon approaches her work. <strong>Engagement and equity</strong> came across as core philosophies in her research. She talked about being trained in an environment where patient engagement was valued from the beginning, and how that shaped her practice. Her approach seems grounded in theory and science, but equally in lived expertise, reflexivity, and awareness of her own positionality as a researcher. As a student, I feel lucky to be learning in an environment that centers these same principles. And throughout my program, I want to carry forward the idea that <strong>engagement isn’t linear—it’s cyclical.</strong> We act, reflect on what worked and what didn’t, and then adjust. There will always be ways to improve, and, as Sharon and Laesa emphasized, we won’t always get it right the first time. What matters is staying genuine, humble, kind, and compassionate with ourselves as we learn. Mistakes will happen. <strong>What’s important is being open to learning and re-learning.</strong></p><p>One question I’ll continue sitting with after this episode is: <strong>How can I embed principles of relationship-building and “slow science” within the structured nature of implementation science and the faster timelines of a PhD project?</strong> I think it’s possible—it will just require paying attention to those small engagement steps that make up the larger process, and trying to approach each one with intention.</p><p>And I think that’s where I’ll wrap up for today. Thanks for taking the time to reflect with me on this ONE Perspective episode. Until next time.</p><p><strong>Anna Chudyk:</strong></p><p>Great question to ponder, Sasha. Off the top of my head — I think you do this already just by the essence of your very being. You are incredibly thoughtful and intentional, and you naturally slow time down for everyone you work with by truly listening to the meaning behind what they share.</p><p>Every project I’ve seen you partner on includes careful tracking of partners’ input and a commitment to showing how their ideas were or were not incorporated into next steps. You do this in real time too—by actively engaging teams in the discussions where decisions are made and ensuring the process feels transparent and shared. This well-planned and fully present process allows you to masterfully incorporate “slow science” into fast paced academia like no other!</p><p>I encourage everyone listening to check out Sasha’s latest publication titled “<a target="_blank" href="https://jopm.jmir.org/2025/1/e79538">Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study</a>.“ It’s a great example of what I’ve just described. It’s published open access in the <a target="_blank" href="https://jopm.jmir.org/">Journal of Participatory Medicine</a>, which means it is free for anyone to read.</p><p>As always, please be sure to head over to our website at <a target="_blank" href="https://asperusual.substack.com/">asperusual.substack.com</a> where you can find previous episodes, check out interactive transcripts, and subscribe to our newsletter. And if you haven’t already, please subscribe to the podcast, and leave a positive review, wherever you like to listen — it really helps others find us too.</p><p>You can always reach me directly at anna.asperusual@gmail.com, or connect with me on LinkedIn by searching for <a target="_blank" href="https://www.linkedin.com/in/anna-maria-chudyk-59051630/?originalSubdomain=ca">Anna M. Chudyk</a> — that’s C-H-U-D-Y-K. You can add Sasha to LinkedIn by searching for <a target="_blank" href="https://www.linkedin.com/in/sasha-kullman-6366a4283/?originalSubdomain=ca">Sasha Kullman</a> - K-U-L-L-M-A-N.</p><p>Thanks again for listening — and until 2026, let’s keep working together to make patient engagement in research the standard… or asPERusual.</p> <br/><br/>This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit <a href="https://asperusual.substack.com?utm_medium=podcast&utm_campaign=CTA_1">asperusual.substack.com</a>
November 11, 2025
S3E9 Co-Creating Care: Embedding Family Voices in the Pain Pathway Project
<p><strong>Overview</strong></p><p>In this episode of <strong>asPERusual</strong>, host <a target="_blank" href="https://scholar.google.com/citations?user=PcgKHLUAAAAJ&hl=en"><strong>Anna Chudyk</strong></a> speaks with <a target="_blank" href="https://www.linkedin.com/in/dr-sharon-hj-hou-96089024/"><strong>Dr. Sharon Hou</strong></a> (psychologist and assistant professor at <a target="_blank" href="https://www.sfu.ca/">Simon Fraser University</a>) and <a target="_blank" href="https://www.linkedin.com/in/laesa-kim-a3904a27/"><strong>Laesa Kim</strong></a> (parent partner, and family liaison at <a target="_blank" href="https://www.bcchr.ca/">BC Children’s Hospital Research Institute</a>) about their work on the <a target="_blank" href="https://www.child-bright.ca/child-bright-pain-pathway"><strong>Pain Pathway Project</strong></a><strong>,</strong> a <a target="_blank" href="https://www.child-bright.ca/">CHILD-BRIGHT</a>–funded initiative supporting community pediatricians in managing pain and irritability among children with severe neurological impairments. Together, they explore how embedding family voices from the start transforms research design and implementation, and how trust, co-creation, and reflective collaboration make both research and care more compassionate, accessible, and effective.</p><p><strong>Key Topics & Takeaways</strong></p><p><strong>Pain Pathway Project —</strong> The Pain Pathway is a clinical tool designed to support pediatricians in managing pain and irritability among children with severe neurological impairments.</p><p><strong>Family Voices at the Core — </strong>Families of children with medical complexity were engaged from the outset of the Pain Pathway Project to co-design research and ensure the work reflected real lived experiences.</p><p><strong>Parent Monitoring Board — </strong>A Parent Monitoring Board guided Phase Two of the Pain Pathway Project, helping design the study, review materials, and identify communication and accessibility needs.</p><p><strong>Co-created Foundations for Partnership — </strong>Families and researchers jointly developed clear terms of reference outlining roles, communication, and compensation—building trust, equity, and authentic collaboration.</p><p><strong>Meaningful Impact on Research and Practice — </strong>Family partners influenced tangible outcomes, including a glossary to clarify research language, visual tools to explain processes. They will be involved in teaching pediatricians to use the Pain Pathway tool.</p><p><strong>Relational and Reflective Approach:</strong>The team emphasized “slow science”—prioritizing relationship building, open dialogue, and humility—to make both research and care more compassionate and inclusive.</p><p>Meet our guests</p><p><a target="_blank" href="https://www.linkedin.com/in/dr-sharon-hj-hou-96089024/"><strong>Sharon Hou</strong></a> is a registered psychologist and assistant professor in the Faculty of Education at <a target="_blank" href="https://www.sfu.ca/">Simon Fraser University</a>, and an investigator at <a target="_blank" href="https://www.bcchr.ca/">BC Children’s Hospital Research Institute</a>. She studies how cultural context shapes care and outcomes, focusing on historically underserved or equity-denied groups. By partnering with people with lived expertise, Sharon’s work centres the voices of youth and families to ensure that research translates into meaningful change.</p><p>Thanks for reading asPERusual! Subscribe for free to receive new posts and support my work.</p><p><a target="_blank" href="https://www.linkedin.com/in/laesa-kim-a3904a27/"><strong>Laesa Kim</strong></a> has been engaged as a parent partner in research projects across Canada, and most specifically with work at <a target="_blank" href="https://www.bcchr.ca/">BC Children’s Hospital Research Institute</a> and <a target="_blank" href="https://www.canuckplace.org/our-care/research/">Canuck Place Research Initiative</a>, for the last five years. She is most proud of leading her own qualitative study on what motivates parents to participate in research for their children. Beyond research, Laesa engages as a vocal advocate for the medically complex community in online spaces, as a board member with <a target="_blank" href="https://www.bccomplexkids.ca/">BC Complex Kids Society</a>, and in sharing the realities of this complex life in her memoir, <a target="_blank" href="https://www.laesafaith.com/book">Can’t Breathe</a>.</p> <br/><br/>This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit <a href="https://asperusual.substack.com?utm_medium=podcast&utm_campaign=CTA_1">asperusual.substack.com</a>
October 28, 2025
S3E8.5 - onePERspective
<p>In this onePERspective episode, doctoral student <strong>Sasha Kullman</strong> reflects on insights from <a target="_blank" href="https://asperusual.substack.com/p/s3e8-shared-roles-shared-power-lessons">Season 3, Episode 8</a> of asPERusual, which featured <a target="_blank" href="https://ca.linkedin.com/in/sara-pot-897185166"><strong>Sara Pot</strong></a> and <a target="_blank" href="https://www.linkedin.com/in/alicia-hilderley-phd/?originalSubdomain=ca"><strong>Alicia Hilderley</strong></a> from <a target="_blank" href="https://www.rarekidscan.com/"><strong>RareKids-CAN</strong></a>. Sasha explores how RareKids-CAN’s embedded partnership model moves engagement beyond advisory panels toward shared leadership and organizational integration. She discusses what co-facilitation, trust, and “first-name culture” can teach emerging researchers about building safer, more collaborative spaces with youth and family partners—and how vulnerability and personal storytelling can strengthen connection and authenticity in research relationships.</p> <br/><br/>This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit <a href="https://asperusual.substack.com?utm_medium=podcast&utm_campaign=CTA_1">asperusual.substack.com</a>
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