As PER Usual

Anna Chudyk, Bryn Robinson and Roger Stoddard
As PER Usual

a podcast for practical patient engagement asperusual.substack.com

  1. S2E9.5 - onePERspective

    9 DE JUL.

    S2E9.5 - onePERspective

    Welp, it's a wrap folks! Welcome to the last episode of Season 2 of asPERusual and onePERspective. 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 CHILD-BRIGHT. 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 CHILD-Bright episode and learn more about engaging children, youth, and families in research. Episode Transcript: 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. My name is Anna Chudyk, and I am asPERusual’s host. This is officially the last episode of season 2 of asPERusual, and onePERspective, by association. But have no fear, I’m already booking tapings for next season, so we definitely do plan to be back sometime in the fall again. On this episode of onePERspective, Kathy is recapping our previous episode that featured Carrie Costello, Annette Majnemer and Gillian Backlin from the Strategy for Patient-Oriented Research (or SPOR for Short) CHILD-BRIGHT Network. The network is funded by the Canadian Institutes of Health Research – Canada’s national health research funder – with the aim of making the future brighter for children with brain-based developmental disabilities and their families through patient engagement (also referred to as patient and public involvement) and patient-oriented research. If you’re unfamiliar with the concepts, patient engagement actively and meaningfully involves patients and caregivers as members of research teams, while patient-oriented research incorporates patient engagement into research that focuses on patient-identified priorities and outcomes. Now that we’re all hopefully on the same page, I’ll hand it over to you Kathy for your onePERspective! Kathy Smith: All of the patient engagement entities funded by Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) have given us insightful and unique models for patient and public involvement. CHILD-BRIGHT is a national network made up of a team 15 funders, 500 researchers, as well as clinicians, policy-makers, parents. What stands out though is the inclusion of young partners with lived, or living, experience (PWLEs). CHILD-BRIGHT authentically integrates children as active team members in all research projects and advisory activities. They are all focused on making brighter futures for children and youth with brain-based developmental disabilities. Hearing Carrie, Annette and Gillian describe the depth and breadth of engagement of their youth sector was something new that piqued my interest. “Nothing abut me without me” is really in play. We listeners learned about special considerations related to authentically engaging younger people and their families. We were given how-to methods we could now incorporate within our own engagement communities. As well, Carrie, Annette and Gillian provided examples of where the PWLE voices powered moving research into improved practice and policies for all children living with brain-based developmental challenges. For proof of concept, Id like to share a couple of my own personal affirmations of the power of the voices of children with lived experience can contribute. At our regional hospital, a very young child had endured repeated surgeries. Finally, he asked if he could be taken into surgery in a wagon, instead of the big scary gurney. Now, all children at our regional hospital enjoy that wagon ride into surgery. A child engineered this patient-centric improvement in care! A powerful example of “for patients by patients” done by a young PWLE! I’ll share a more personal example convincing me of the power

    12min
  2. 1 DE JUL.

    S2E9 - Engaging Youth and Families: A Practical Discussion with the CHILD-BRIGHT Network

    Overview In this episode of asPERusual, host Anna Chudyk sits down with Carrie Costello, Annette Majnemer and Gillian Backlin from the CHILD-BRIGHT Network. Our discussion includes: * An overview of CHILD-BRIGHT, including its key activities and ways to get involved; * Different ways in which CHILD-BRIGHT is actively seeking to increase diversity within their network; * Practical considerations for engaging with youth and families in research - from initiating relationships to evaluating engagement work. * Tips for fostering authenticity, respect, and reciprocity, and creating environments where engagement can thrive. The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) and 15 funding partners across the country, this national network includes 500 researchers, clinicians, decision-makers, youth, and parents. Meet our guests Carrie Costello is the Implementation Support Coordinator for The Center for Implementation. She is a graduate of the University of Victoria BFA program and came into research after her middle child was diagnosed early in life with a profound intellectual disability and a seizure disorder. She has been a parent partner in research on over 15 projects and is the primary co-investigator on two of these research studies.  She specializes in facilitating conversations with children and youth.  Carrie is the parent liaison for the CHILD-BRIGHT Network and previously was the Patient Engagement Coordinator at the  Children's Hospital Research Institute of Manitoba. In 2023, she won the Frank Gavin Patient Engagement Leadership Award and the Made With Patients Rising Star award for her work. Carrie is also an award-winning playwright for young audiences and an avid puppeteer Annette Majnemer, OT, PhD, FCAHS is an occupational therapist with doctoral training in the neurosciences. She is Professor at the School of Physical & Occupational Therapy, a Senior Scientist at the Research Institute - McGill University Health Centre (Montreal Children’s Hospital), and a member of Montreal’s Centre for Interdisciplinary Research in Rehabilitation. She is the nominated principal investigator of CHILD-BRIGHT, a CIHR SPOR Network with patient-oriented research focused on children with brain-based disabilities and their families. CHILD-BRIGHT’s mission is to foster a movement for change: moving patients into research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures. Gillian Backlin is a member of the CHILD-BRIGHT Network’s National Youth Advocate Council and serves on other panels and committees within CHILD-BRIGHT, where she uses her skills and draws from lived experience to contribute. Gillian has completed the technical writing certificate at the British Columbia Institute of Technology and currently works as a research assistant while pursuing her bachelor's degree in public health. She also manages an online platform called Spastic & Fantastic to share her life and raise awareness about the stigmas associated with labels, such as “disabled.” In her free time, she enjoys spending time with friends, family, and her dog. 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

    1h15min
  3. 10 DE JUN.

    S2E8.5 - onePERspective

    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 Patient Advisor Network's Reimagining the Research Landscape report. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Reimagining the Research Landscape episode. Episode Transcript: Anna: Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith recaps the previous week’s episode of asPERusual – a podcast for practical patient engagement. Today’s episode of onePERspective is special for two reasons. For starters it marks the first time that Kathy and I have actually seen each other in-person. Although we’ve worked together for over two years in varying capacities, we hadn’t met each other until a few days ago, when Kathy came into town to help co-lead data collection for a participatory design study we are both a part of. As we met I couldn’t help but think of what Alies, our previous episode’s guest had said when she appeared on Season 1 Episode 8 of asPERusual. That is, how funny it is to know someone for a long time as a floating head and then to finally meet them in person with a whole body attached. I’m so glad we finally got a chance to hang out in-person Kathy and I hope the opportunities to do so keep coming. And for anyone who is interested, check out our free newsletter or website (asperusual.substack.com) for a photo from our meeting. Another reason this episode is special is that it focuses on a detour from our regular season 2 programming. That is, the episode focused on a patient-led report from our friends at the Patient Advisors Network, instead of a Strategy for Patient-Oriented Research funded entity. Although I do love patterns and neat boxes, I felt that this deviation was very important given the novelty and findings of this Reimagining the Research Landscape Report, highlights of which I’m sure Kathy will cover next. Alright so before I turn it over to Kathy, there are some acronyms and contextual points I will quickly cover to ensure that all of our listeners out there are able to follow along: The Canadian Institutes of Health Research (or CIHR for short) is Canada’s national funder of health research. In approximately 2010, CIHR established the Strategy for Patient-Oriented Research (or SPOR for short) to champion and support research that focuses on patient-identified priorities and outcomes and involves meaningful and active collaborations between patients, care partners and researchers (the latter of which is referred to as patient engagement in research). SPOR is recently undergoing a revamping, which they have called the SPOR Refresh, which involves among other things, consultations with the patient-oriented research community. The Patient Advisors Network (or PAN for short) is an independent, non-profit pan-Canadian organization comprised of patients and care partners that was asked by SPOR to carry out their own consultation activities to help inform the SPOR refresh. Ok so I hope that was more helpful than confusing, and I do encourage everyone out there to listen to last week’s episode or check out our website (asperusual.substack.com) for today’s interactive transcript that will help make things even more clear. And with that, over to you Kathy for your onePERsective! Kathy Smith: Thanks, Anna. It was really a pleasure to finally meet you in person, and I'm looking forward to many more partnerships as we move forward! This is a unique SPOR initiative that we're looking at today. The pan-Canadian Patient Advisors Network (PAN) was tasked to survey patients engaged in research experiences right across Canada. Alies Maybee and Donna Rubenstein, along with a patient steering committee, created and produced an innovative and precedent setting experience survey to i

    11min
  4. 3 DE JUN.

    S2E8 - Patient partners weigh in on the future of patient-oriented research

    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

    52min
  5. S2E7.5 - onePERspective

    20 DE MAI.

    S2E7.5 - onePERspective

    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

    11min
  6. 13 DE MAI.

    S2E7 - Engaging with your health data

    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

    56min
  7. 29 DE ABR.

    S2E6.5 - onePERspective

    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

    10min
  8. 22 DE ABR.

    S2E6 - Listen to SPOR Diabetes Action Canada

    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

    1h1min

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