As PER Usual

Meet our guest listener

Sasha Kullman: Sasha is a PhD student in the College of Pharmacy at the University of Manitoba, supervised by Dr. Anna Chudyk. She holds a master’s degree from the Faculty of Kinesiology and Recreation Management at the same institution, where her research focused on health psychology, health promotion, and patient engagement in research. Funded by a CIHR Canada Graduate Scholarship, Sasha’s doctoral work continues to center on participatory approaches, involving patients and their families in research designed to enhance healthcare experiences.

Episode Transcript:

Anna Chudyk:

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, Anna Chudyk.

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.

Before we wrap up the year, I’m thrilled to be joined once again by Sasha Kullman, a doctoral trainee in my lab. Sasha, I’m really looking forward to hearing your key takeaways from Season 3, Episode 9 of asPERusual, which featured Dr. Sharon Hou (a psychologist and assistant professor at Simon Fraser University) and Laesa Kim (a parent partner and family liaison at BC Children’s Hospital Research Institute).

Sasha Kullman:

Hi everyone, and welcome back to this episode of onePERspective. I’m Sasha, a doctoral student at the University of Manitoba, located on Treaty 1 Territory here in Winnipeg— and if you’ve listened to these mini episodes before, you’ll know that I’m also Anna’s student.

Today, I’ll share my key learnings from our last full episode of As PER Usual and reflect on how I can apply what our guests shared to my own research with youth and families.

In our last episode, we heard from Dr. Sharon Hou and Laesa Kim, who discussed their CHILD-BRIGHT–funded Pain Pathway Project, 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.

What stood out most from this discussion was Sharon and Laesa’s description of the parent monitoring board, 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.

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 it functions as a research philosophy rather than a box to check.

Starting with the practical tips, one that I know I’ll apply in my own work is the importance of creating a “terms of reference” document (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.

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, I see it as being built from many small actions that occur across the entire research journey. 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.

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, sending the email is usually better than holding back. 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.

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 the significance of Laesa’s role 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. She helped ensure that those small steps of engagement were intentional and meaningful, 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.

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.

Another important takeaway was the development of a glossary and a visual diagram 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.

I also want to reflect on how Sharon approaches her work. Engagement and equity 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 engagement isn’t linear—it’s cyclical. 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. What’s important is being open to learning and re-learning.

One question I’ll continue sitting with after this episode is: 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? 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.

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.

Anna Chudyk:

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.

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!

I encourage everyone listening to check out Sasha’s latest publication titled “Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.“ It’s a great example of what I’ve just described. It’s published open access in the Journal of Participatory Medicine, which means it is free for anyone to read.

As always, please be sure to head over to our website at asperusual.substack.com 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.

You can always reach me directly at [email protected], or connect with me on LinkedIn by searching for Anna M. Chudyk — that’s C-H-U-D-Y-K. You can add Sasha to LinkedIn by searching for Sasha Kullman - K-U-L-L-M-A-N.

Thanks again for listening — and until 2026, let’s keep working together to make patient engagement in research the standard… or asPERusual.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this episode of asPERusual, host Anna Chudyk speaks with Dr. Sharon Hou (psychologist and assistant professor at Simon Fraser University) and Laesa Kim (parent partner, and family liaison at BC Children’s Hospital Research Institute) about their work on the Pain Pathway Project, a CHILD-BRIGHT–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.

Key Topics & Takeaways

Pain Pathway Project — The Pain Pathway is a clinical tool designed to support pediatricians in managing pain and irritability among children with severe neurological impairments.

Family Voices at the Core — 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.

Parent Monitoring Board — A Parent Monitoring Board guided Phase Two of the Pain Pathway Project, helping design the study, review materials, and identify communication and accessibility needs.

Co-created Foundations for Partnership — Families and researchers jointly developed clear terms of reference outlining roles, communication, and compensation—building trust, equity, and authentic collaboration.

Meaningful Impact on Research and Practice — 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.

Relational and Reflective Approach:The team emphasized “slow science”—prioritizing relationship building, open dialogue, and humility—to make both research and care more compassionate and inclusive.

Meet our guests

Sharon Hou is a registered psychologist and assistant professor in the Faculty of Education at Simon Fraser University, and an investigator at BC Children’s Hospital Research Institute. 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.

Thanks for reading asPERusual! Subscribe for free to receive new posts and support my work.

Laesa Kim has been engaged as a parent partner in research projects across Canada, and most specifically with work at BC Children’s Hospital Research Institute and Canuck Place Research Initiative, 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 BC Complex Kids Society, and in sharing the realities of this complex life in her memoir, Can’t Breathe.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode, doctoral student Sasha Kullman reflects on insights from Season 3, Episode 8 of asPERusual, which featured Sara Pot and Alicia Hilderley from RareKids-CAN. 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.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this episode of asPERusual, host Anna Chudyk speaks with Sara Pott (family partner with lived/living experience) and Alicia Hilderley (clinical-trials researcher) about their shared Patient & Family Engagement Facilitator role at RareKids-CAN, Canada’s pediatric rare disease clinical trials and treatment network. Together, they unpack how pairing lived/living and research experience moves teams beyond advisory panels into embedded partnership, and how trust, safety, and thoughtful design shift power dynamics in the day-to-day.

Key Topics & Takeaways

From Advisory to Integrated Partnership — How RareKids-CAN places youth and family partners inside governance and decision-making (not just consultative roles), with flexible levels of engagement across a coast-to-coast community.

The Shared Role Model — Why splitting the facilitator role between a family partner and a researcher strengthens fidelity, closes knowledge gaps (e.g., clinical-trials literacy), and makes brokering relationships and readiness support possible for both partners and researchers.

Trust, Safety & Language — Using first-name culture, appropriate vulnerability, and clear boundaries to reduce hierarchy; asking “What does a safe space look like for you?” before deeper “help me understand” conversations.

Working Together Agreements (Living Docs) — A more approachable take on a terms-of-reference document. These living agreements capture who each team member is, how they like to be referred to, what motivates their engagement, and how they’d like to be engaged.

Embracing diverse perspectives — Recruiting multiple partners, resourcing varied levels of engagement, and routinely asking “Whose story is missing?” to prevent over-reliance on one voice.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode, doctoral student Sasha Kullman reflects on Season 3, Episode 7 of asPERusual, which featured Rae Martens discussing practical tips for engaging children, youth, and families in research. Sasha shares key takeaways on meeting children and youth where they’re at through activities and general approaches, balancing autonomy with parental involvement, creating safe spaces, and approaching mistakes with compassion and grace. Her reflections highlight the importance of trust, creativity, and vulnerability in building meaningful research partnerships with youth and families.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this follow-up conversation with knowledge broker and bereaved parent-advocate Rae Martens (Family Engagement in Research Program/ Kids Brain Health Network / Can Child Center for Childhood Disability Research), we move from principles to practice: how to create developmentally appropriate, emotionally safe, and genuinely collaborative research partnerships with children, youth, and families.

Key Topics & Take-Aways

Safety, Autonomy & Consent: Build youth-only voice and choice into the process (clear opt-outs, code words, flexible participation/closure) and treat “no” as a complete sentence.

Design for Belonging (not convenience alone): Choose spaces and formats that feel safe and accessible (breaks, neurodiversity-friendly rooms, food, hybrid/online options), and normalize caregiving realities on calls.

Engagement ≠ Recruitment: Involve kids and families early to shape questions and methods; adapt language to them (mirroring, “what did you hear me ask?”), and distinguish partnership from participation.

Playful, Practical Methods: Try warm-ups and co-creation tools (question soccer ball, LEGO®, social stories, joint “yes-and” storytelling for dyads), and close loops with gratitude, aftercare, and simple follow-ups.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode of asPERusual, doctoral trainee Sasha Kullman reflects on key take aways from Season 3, Episode 6 of asPERusual, which featured guests Sunday Queskekapow and Brianna Hunt. Sasha emphasizes why framing research around “sensitive topics” — rather than deficit-based terms like “vulnerable” or “marginalized” — shifts power and narrative back to communities. She highlights the ethical imperative of including peer researchers with lived experience, the importance of pre-research relationship building, and the responsibility of academic teams to support peer researchers emotionally, materially, and culturally. The central takeaway: ethical, justice-oriented research requires humility, reciprocity, and creating safe, supportive spaces for both participants and peer researchers.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this latest episode of asPERusual, host Anna Chudyk is joined once again by Brianna Hunt and new guest Sunday Queskekapow to explore what it truly means to engage children, youth, and families with lived/living experiences of sensitive topics—such as homelessness, substance use, and systemic oppression—in health research. Building on their work in the Art as Knowledge Mobilization project, they discuss the importance of using art, ceremony, and community-rooted relationships to foster trust, safety, and meaningful participation in research.

Sunday, a Two-Spirit Swampy Cree advocate and peer researcher, shares firsthand how centering Indigenous methodologies and lived experience transformed the project into something affirming and empowering for youth participants. Brianna, a settler researcher and community advocate, highlights the need for justice-oriented research that not only avoids harm but actively dismantles oppressive systems. Together, they emphasize the vital importance of language, relationship-building, compensation equity, and collective data analysis in creating ethical and transformative research spaces.

Key Takeaways

Lived/living experience must be at the center of research on sensitive topics to ensure ethical, trauma-informed, and culturally grounded approaches.

Language matters: Terms like “peer researcher” and “sensitive topics” empower participants more than labels like “vulnerable” or “marginalized.”

Relationships are foundational—building trust and mutual respect between researchers and communities is essential across all stages of the research cycle.

Honoraria and support must be thoughtful and equitable, reflecting participants’ expertise and lived experience on par with other research professionals.

Justice-oriented research goes beyond ethics—it aims to actively disrupt systems of inequity and empower communities through reciprocal partnerships.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode of asPERusual, doctoral trainee Sasha Kullman shares how her journey in patient engagement in research has transformed her understanding of what it means to be a researcher. Building on the insights shared by Rae Martens in Season 2 Episode 5 of asPERusual, Sasha discusses how viewing engagement as a psychosocial, relational practice has shaped both her professional growth and personal identity. She emphasizes the power of co-creation, the importance of mentorship, and the value of relationship-building in research. Through personal reflection, Sasha invites listeners to consider how strong relationships—not just expertise—are the true foundation of meaningful patient engagement.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this latest episode of asPERusual, host Anna Chudyk welcomes back Rae Martens — knowledge broker with the Family Engagement in Research Program (FER) and a bereaved parent and advocate — to explore how patient engagement is not just a methodological tool, but a deeply psychosocial, relational practice.

Rae shares her personal and professional journey, describing how meaningful partnerships are built through trust, emotional accessibility, and a deep awareness of the lived realities of patient partners. From the structure of the FER training program to the philosophy that underpins it, this episode reveals what happens when research becomes a space for coexistence, not just collaboration.

Listeners are invited into a conversation that challenges the traditional boundaries of research training, emphasizing community, care, and evolving identity — for both researchers and patient partners.

🔑 Key Topics Discussed:

Engagement as a psychosocial practice: Understanding how research partnerships impact the body, mind, and spirit—especially for patient partners.

The role of knowledge brokers: Building trust, mentoring, and helping people find their place in the research world.

FER 101 and 201 Micro-Credential Courses:

101: Focus on relationship-building, co-developing tools, and practicing engagement

201: Leadership development for advancing engagement at scale

Accessibility in engagement:

Emotional accessibility for caregivers and marginalized populations

Tools like the “Big Red Help Button” and flexible course expectations

The evolving identity of patient partners:

Engagement as part of identity, not just contribution

Recognizing leadership potential among patient partners

Community of practice: Sustaining connection beyond courses through multiple modalities and open-door structures like the “Parents Partnering in Research” Facebook group

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com