As PER Usual Anna Chudyk, Bryn Robinson and Roger Stoddard

Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with representatives from the SPOR Canadian Data Platform to learn about the different ways the network is engaging Canadians in conversations about their health data. Key topics covered include:
* the ways in which multi-regional data access contributes to a learning health system,
* how health data can contribute to improvements in health and health equity,
* ways in which the network engages Canadians in conversation about what they think about health data and its use and the types of health data and outcomes that matter to them, and
* patient and public engagement in the network’s governance.
Guests Kim McGrail, Frank Gavin, and Catherine Street also discuss key issues that patients and the public have raised about their health data, which revolve around the themes of:
* trust, security, and safety;
* equity, fairness, and access;
* data availability and the types of data that are collected;
* the language used to talk about data, and;
* ownership — e.g., who owns health data? who controls how “their” health data are used?
As you’ll hear stated in episode, “Health data really is for all of us… so for those who are interested, there's ways to get involved. And those who are less interested can have some trust that there are people like them who are involved, and therefore they they can worry about other things that might be more of a priority and interest to them… we all have a responsibility to understand the data that we're using.” So what are you waiting for? Tune in and join the conversation about your health data!
Meet our guests
Catherine Street is the Director of the Newfoundland and Labrador SPOR SUPPORT Unit and the Executive Lead for Public Engagement with Health Data Research Network Canada.  She has worked in Patient / Public Oriented Research since 2014, when she was appointed Director, NL SUPPORT at Memorial University, St John’s Newfoundland and Labrador .
Frank Gavin chaired the Public Advisory Council of the Health Data Research Network (Canada) from 2019 to early 2024. He has been involved in healthcare and health research as a patient, a caregiver, and a member of the public, often in relation to children's health, since 1995. Frank taught English at Centennial College in Toronto for 30 years.
Kim McGrail is a Professor in the UBC School of Population and Public Health and Scientific Director of Health Data Research Network Canada. Some of her research uses large data sets to look at the effects of big policy changes such as changes in the way physicians are paid. She also has led deliberations with the public on how health data can be used to benefit people and communities.


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 feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Diabetes Action Canada. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Diabetes Action Canada episode.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy will be recapping the episode in which Tracy McQuire and Linxi Mytkolli came to talk about the Strategy for Patient-Oriented Research Diabetes Action Canada, or DAC as its known for short. In case you haven’t listened to that episode, Diabetes Action Canada is a network of patients, care partners and researchers that work together to identify the health concerns of those living with diabetes and co-create research projects to address them. It is funded by the Strategy for Patient-Oriented Research, also known as SPOR for short, which is a national coalition that was created by Canada’s major public funder of health research to champion and support patient-oriented research. Alright — take it away Kathy with your onePERspective.
Kathy Smith:
Building equitable relationships is the cornerstone of an engagement strategy. Never underestimate the time it takes to build trust, transparency; understand and address/accept the inevitable power imbalances. Over communicate. Over explain. That was one of the many strong messages shared by Tracy McGuire and Linxi Mytkolli of Diabetes Action Canada. And how many times have we heard that very same message from our other engagement platform podcasters? Relationship building takes a patience of time to do it right. Once everyone gets on board and speaks the same language, you can proceed full steam ahead!
Something remarkable and perhaps unique is that DAC has a dedicated patient engagement navigator/manager on staff. What a thrill to hear Linxi and Tracy single out this dedicated manager position as an absolute “must” to set everyone up for success with patient partnering in research. The Navigator is a “niche role” that can’t be filled by just anyone. It requires someone laser focused, experienced, and well-educated in team building. This dynamic multi-tasker must train, upskill, mentor, facilitate and co-ordinate events. The Navigator communicates with each group individually and collectively. That’s a lot of work and a lot of hats to wear! And Linxi wears yet another hat to balance the wants and needs of her four “L” partner groups:
the Lived — the people who have had the healthcare experience;
the Loved — the care partners for the patient;
the Learned — the academics;
the Labourers — your clinicians and co-ordinators.
While the 4 “L”s contribute uniquely important lived experiences and expertise, each speaks with their own jargon. So, like and orchestra conductor, the navigator must blend these lexicons into a common language. “Re-calculating” as Siri tells us - aligning to collaborate, to set the goals and logistics of a co-designed study.
I was thrilled to hear Tracy describe how DAC is now gathering patient ideas for research studies and then helping patients put their ideas into research proposals as lead researchers. For patients by patients – that’s quite a mindful, patient-facing innovation. Standardized screening for diabetic retinopathy led by Dr. Valeria Rac was one such study completely driven by patient partners!
DAC stands out for its depth and breadth of patient partnership opportunities anywhere along the study continuum and for all the training partnerships that they have established as well. It’s nice to see DAC’s emphasis on evaluation. That to me addresses a big need in patien

Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada to learn all about the different ways in which this Strategy for Patient-Oriented Research network is committed to improving the lives of persons living with diabetes. Highlights include in-depth discussions of:
* the different ways in which Diabetes Action Canada brings together the 4 L’s (people with lived, loved, learned, and labored experience of diabetes) in finding a common language and space for them to work together to make better research, better policy, and better programs that ultimately improve the lives of those living with diabetes.
* Diabetes Action Canada’s innovative approach to evaluation (at the network and individual level) and what it reveals about the ways in which the network stands out;
* the depth and breadth of involvement and engagement opportunities within the network, as well as their countless benefits; and
* key take-aways including the applicability of patient engagement across the spectrum of research and the need to democratize how we do patient engagement.
Hooked? Read press play and be sure to subscribe!
Meet our guests
Tracy McQuire: has been with Diabetes Action Canada for over 5 years, first as the Manager, Research Operations and now as Executive Director. Tracy brings more than 15 years of research project and program management experience as well as research operations and strategic planning expertise. Prior to joining Diabetes Action Canada, Tracy was the Business Manager for the Toronto General Hospital Research Institute at University Health Network (UHN), leading the strategic planning process and implementation strategy to align research priorities to clinical programs. Tracy holds both a Bachelor’s degree in Biology and a Master’s Degree in Genetics from Queen’s University and obtained her Project Management Professional designation in 2012.
Linxi Mytkolli: started with Diabetes Action Canada as a Patient Partner for over a year. She is now excited to join the team in her new capacity as the Lead of Patient Engagement and Knowledge Mobilization. Prior to joining DAC, she was a Senior Program Manager supporting a national suicide prevention and life promotion program with the Mental Health Commission of Canada. In this work, she focused on centering the wisdom of those with lived and living experience, while also translating findings from academic partners into tangible tools for the participating communities. In addition to her leadership in the mental health space, Linxi has more than six years of experience leading national programs in urban research, youth wellbeing, and sustainability in healthcare. Linxi holds a Bachelor of Science in Biopharmaceutical Sciences (uOttawa) and a Master of Science in Sustainability Management from the University of Toronto.


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 feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR National Training Entity (NTE) Passerelle. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last weelk's episode or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you!
Episode Transcript:
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today, Kathy Smith will be discussing the episode in which Annie LeBlanc and Yvonne Pelling came to talk about the Strategy for Patient-Oriented Research National Training Entity Passerelle, or NTE as its known for short. The Strategy for Patient-Oriented Research, also known as SPOR for short, is a national coalition that was created by Canada’s major public funder of health research, the Canadian Institutes of Health Research, to champion and support patient-oriented research. As a reminder, patient-oriented research focuses on patient and public identified priorities and outcomes and engages patients and the public as members of the research team (which is referred to in Canada as patient engagement in research). The NTE is a network of networks that was funded by SPOR to increase capacity for patient engagement and patient oriented research. You might want to check out our website, asperusual.substack.com, if you want help keeping all of those details straight. Ok. Enough from me. I’ll turn it over to you Kathy for your onePERspective.
Kathy Smith:
Thanks, Anna. Here's another enlightening episode for anyone interested in engaging in patient oriented research. In my last personally speaking, I asked our listeners to consider dreaming big for a pan-Canadian network of networks. Et voila!! Voici! Here it is! SPOR has already got that started. SPOR? SPOR is the Strategy for Patient-Oriented Research. Members Yvonne and Annie enthusiastically enlightened us about the potential of SPOR’s National Network of Networks they call the National Training Entity (NTE).
Yvonne and Annie tell us NTE aims to build capacity by gathering all POR and PER lessons learned to create training courses and mentoring activities that help make connections to empower patients and researchers alike. Training and mentoring tools are to be developed for managers and funders as well. How? They describe NTE as building “little bridges” (or “passerelles” en francais) that can perform as connectors, catalysts, and facilitators to build PER4POR capacity. PER — patients engaged in research — for POR — patient oriented research. The network of networks can be used by patients wishing to engage in research (known as PEiRs). Researchers wishing to know more about patient-oriented research or to find PEiRs to help in their research can gain access through the passerelles as well.
NTE’s mandate is to connect its user to the right training in the right context for the right person in the right setting, at the right time. Moreover, NTE’s passerelles facilitate connections. The NTE aims to short circuit connecting the right research engagement need to the right PEiRs to fill the need. I'm hoping that all these national capacity building connections, these passerelles (I like that word a lot) will help to transform the traditional research landscape into a much warmer, safe space, an equitable patient engaged in research environment that facilitates PER 4 POR: Patients Engaged in Research for Patient-Oriented Research.
Key messages
For me, the three key messages gleaned from Yvonn

Episode overview
Episode overview
In this episode, we are joined by Yvonne Pelling (the Patient and Community Engagement Lead) and Annie LeBlanc (the Nominated Principal Investigator / Scientific Director) of the Strategy for Patient-Oriented Research (SPOR) Passerelle National Training Entity (NTE). Through their engaging discussions, Yvonne and Annie help listeners re-examine what it means to build patient-oriented research capacity among academic researchers, patient partners, and institutions. As a fun bonus, they also explain the meaning of the word “Passerelle” (*hint* it’s related to the imagery in the episode's thumbnail image).
Meet our guests
Yvonne Pelling: is the Patient and Community Engagement Lead at the SPOR Passerelle National Training Entity. Yvonne began her work in patient-oriented research through the SPOR project, Access Open Minds sitting on the Family and Carers Council. This work sparked her interest in capacity building, training, and learning. Yvonne is currently pursuing a Master’s Degree in Interdisciplinary Education in Learning Sciences at the University of Calgary.
Annie LeBlanc: is the Nominated Principal Investigator / Scientific Director at the SPOR Passerelle National Training Entity. Annie is also a full professor at Laval University in the Faculty of Medicine, and a researcher at Vitam - Laval University’s research centre on sustainable health. Annie came to research through her role as a high school teacher and informal caregiver, which inspired her to learn more about patient education and empowerment. Annie obtained a master’s degree, a PhD, and then entered into her current roles within the field of Patient-Oriented Research.


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 feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR Chronic Pain Network. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you! As a heads up -- the episode opens with a notice about the "Health Data for All of Us: Earning Trust Through Transparency" public forum that is being put on by Health Data Research Network Canada on April 23rd, 2024. Keep listening for more details about this free and exciting hybrid event.
Episode Transcript:
Anna:
Hi everyone! Welcome back to onePERspective – a triweekly segment focused on hearing a patient partner’s recap and reflections on the previous week’s episode of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. In less than two minutes, I will hand things over to Kathy Smith, a patient partner from Thunder Bay. Kathy is once again set to offer her onePERspective on last week’s episode of asPERusual focused on the Strategy for Patient-Oriented Research Chronic Pain Network. All of the views expressed are her own.
Now before I hand things over to Kathy, I would like to briefly bring your attention to a public form that is being put on by Health Data Research Network Canada on April 23, 2024 in Montreal Canada. The forum’s title is Health Data for All of Us - Earning Trust Through Transparency. If you are interested in joining academic researchers, community groups, members of the public, industry leaders, and policymakers in timely and thought-provoking discussions about the issues of trust and transparency in the use of health data in Canada, this forum is for you! This day-long event is open to the public, and a hybrid event, meaning that you can attend virtually or in-person. You should note however that there is a charge of $10 if you would like to attend in person and are a member of the public, a community group or student; the tickets go up in price dependent on whether you are a researcher or from the public or private sectors. The stellar lineup of speakers includes health data researchers, data equity advocates and patient partners committed to building trust among the public in the access, use and sharing of health data. There is a limited amount of available tickets so be sure to snag yours - we’ve posted a link to the event on our Substack or you can always Google, Health Data for All of Us - Earning Trust Through Transparency public forum. I’ll be checking out the event virtually so hopefully I will see you there!
Alright, now over to you Kathy. Please take it away with your onePERspective.
Kathy Smith:
Thank you, Anna, for all the hard work you've done to show us a variety of platforms for engaging patients in research. Readers can see common threads developing throughout each of them, but they are in for something new with the CPN’s platform. That's the Chronic Pain Network. Other chronic diseases like arthritis, cancer, heart and stroke, or diabetes engage with long standing, recognized medical disciplines with well entrenched power imbalances that are undergoing adjustments in attitude and in collaborative strategies to accommodate patients as partners. The Chronic Pain Network, made up of a multi-stakeholder group, including patient partners, were the original ones who lobbied the College of Physicians and Surgeons to recognize pain as a brand new standalone, certified medical discipline. So lived experience partners and the medical and clinical experts worked in tandem right from the get go in this brand new field of medicine. They started out as equal shareholders deve