As PER Usual Anna Chudyk, Bryn Robinson and Roger Stoddard

Overview
In this episode of asPERusual, host Anna Chudyk sits down with Alies Maybee and Donna Rubenstein from the Patient Advisors Network to discuss the recently published Reimagining the Research Landscape Report. This patient led-report examined ~200 patient partners’ perspectives on the future of patient-oriented research in Canada. Tune in to learn about the three main take-aways from the report, including:
Changing the research landscape: What needs to occur at micro, meso, and macro levels to promote and support patient engagement in research;
Growing the patient/caregiver partner community: Targeted and intentional outreach to open doors to research for future patient partners;
Changing academic culture: To promote respect and prevent the tokenistic engagement of patient partners.
Bonus content includes:
expected and unexpected benefits of patient-led research;
tips for establishing patient advisory councils to support in-depth engagement;
next steps for fostering respect and reducing discrimination within research teams and;
other tangible applications of the Reimagining the Research Landscape Report.
Meet our guests
Donna Rubenstein: is committed to demonstrating the transformative value of the patient and community voice through partnerships in all aspects of healthcare. Her views are shaped by personal experience as a patient and caregiver as well as a career working internationally bridging cross cultural differences in business practices. PAN and the people she met through the network inspired her patient partner journey –helping her see new and bigger possibilities. She wants others to have the same experience. 
Current activities include projects at the provincial and national level. These include the Patient Public Partner Council for the Maritime SPOR Support Unit, Nova Scotia Health Patient Family Advisor Building Connections Committee, Nova Scotia Health Virtual Innovation projects and primary care research related to interdisciplinary models of care.
Alies Maybee: brings her patient/caregiver background to her commitment to improve many aspects of healthcare. She has on the ground experience as a patient partner on over eight research projects since 2014 and has taken the PaCER, University of Alberta course training patients and caregivers to be community researchers.
In the research management and governance area, Alies was one of the initial citizen members of the Research Management Committee of the Canadian Frailty Network for nearly 4 years evaluating research applications. She has also been on the ARTIC Operational Committee focusing on scale and spread of proven interventions and the INSPIRE-Primary Health Care Operations Committee focusing on access to care, the care experience for patients and better health outcomes. She was on the National Patient Council and the National Leadership Council for the Primary and Integrated Health Care Innovations Network. She is a member of the Policy Engagement Committee for Research Canada.
And finally, she is one of 12 co-founders and current co-chair of the Patient Advisors Network (PAN), a national community of practice for patient/caregiver partners. PAN is a fully independent organization of patient/caregiver partners in Canada and as such, is unique.


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 Canadian Data Platform. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR Canadian Data Platform 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 our episode that featured Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research (or SPOR for Short) Canadian Data Platform. The platform is funded by the Canadian Institutes of Health Research – Canada’s national health research funder – with the aim of helping to create a multi-jurisdictional data access support system. Importantly, the SPOR Canadian Data Platform also does a lot of impressive work to engage Canadians in conversation about their health data, including how its collected, used, and applied to better health outcomes and create a more equitable healthcare system. So without further ado, take it away Kathy with your onePERspective.
Kathy Smith:
Thank you for that, Anna. In the previous six episodes, we have been introduced to patient facing engagement platforms funded by SPOR. This time, however, it's a little different. Catherine Street, Kim McGrail, and Frank Gavin share a clinician scientist facing SPOR platform, the Canadian Data Platform, or the SPOR-DP for short. Dr. Catherine Street described SPOR-DP's main function as to bring together multi-regional data for improvement, innovation and evaluation essential to a learning health system.
How does data collection intersect with patient collaboration? Frank showed us how patients do play a large role in helping shape the data platform by supporting research that focuses on patient identified priorities. SPOR-DP has a public advisory council. It's a forum where the public and the professionals, the policymakers and the researchers and the scientists meet to discuss issues around data collection, data sharing, and data access. I think everyone will agree that the number one data issue is transparency and trust. The less transparent the data collection and sharing processes, the less trust the public has in its information.
Other data deliberations surround:
the security of collection and safe storage of the data,
the equity of access to the data,
the types of data collected or missed,
the privacy and ownership of the data,
who controls the use of the data, and
who can benefit from the health care data collected?
What we all want to know is how do the data collected impact the health of people and/or communities?
That's a tall ask of the patients and professionals on this program, but access to this pan-Canadian data repository can build a better understanding of priorities that are funding the research that moves science ahead and, as a result, better health care for all. I think that Frank zeroed in on one of our basic human instincts the why, the how, the when and the where. Curiosity. Curiosity is the driver of interest in data.
As a learning system, we all want to use data to make sure we are doing things that are helping address gaps, reduce errors and workloads, support underserved communities, and of course, do no harm. Like Frank, I too have experience with members of my family who face the inter versus intra provincial discrepancies in access to treatment and/or drugs. Perhaps pan-Canadian population studies with DP's repository hopefully will show policymakers the pressing need to reduce this error. No one should be denied access to treatment by virtue of geography or provincial boundaries. We do need a pan-Canadian management board to addr

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