Podcasts about patient oriented research

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 Building capacity with the SPOR IMAGINE Network. 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 IMAGINE Network episode.Episode Transcript:Anna:Hi everyone! Welcome to Season 3's first episode of onePERspective. As a reminder, this is 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. Before I turn things over to Kathy to provide a recap of Season 3 Episode 1, I want to do a huge shout out to her. Kathy, you faced huge tech related barriers that would have made most other people peace out on making this episode a reality. But you kept trying all week and persevering and here we finally are. Something you kept saying was, I don't want to let you down. But the thing is, I don't think you could ever let me down if you tried. Our long-standing bond grew out of and transcends or working relationship, and that's what patient engagement is all about. So thank you so much, Kathy, for loving this labor of love of a podcast as much as I do. And now let me turn it over to you for your onePERspective.Kathy Smith:Thank you Anna and hello everyone. First off, I would like to gratefully acknowledge the ancestral keepers of the beautiful and bountiful land upon which my city of Thunder Bay was built about a quarter of a century ago. We are at the epicenter of Canada, at the head of the greatest, deepest and cleanest of the Great Lakes, Lake Superior, the mighty Gitche Gumee. This area is the traditional territory and homeland of the Anishinaabe People, which includes the Ojibwa/Chippewa of Fort William First Nation, signatories to the Robinson Superior Treaty of 1850. My father's family migrated from Sweden to Turtle Island (Canada) in the late 1800s. They all settled in Minnesota, but only my grandfather preferred to live and work in Canada as a lumberjack. My mother's family also first migrated to America way back in the early 1700s. A family joke is that they told the Mayflower where to land. They moved first up to New Brunswick, as United Empire Loyalists, with some settling here to work in the forest building and serving the railway. Both families chose to live and thrive here in pristine northwestern Ontario, and they gratefully spoke often of the huge debt we owed to its original land keepers. Whether as a child in the family car on a Sunday drive to nowhere, or as a mom camping everywhere with my own four children, or now just meandering with my hubby along the majestic woodland trails, I am in awe of the breathtaking, balance, and restoring beauty of our natural surroundings. I respect the ancestral stewards for their profound spiritual connection to Mother Earth and all the living things that guided them to practice reverence, humility and reciprocity with her gifts of pure air, clean water, mineral rich soil, and abundant flora and fauna. I am very grateful also for the significant contributions made by the Metis Peoples, both past and present. Miigwech!Thank you to our Building Capacity with SPOR IMAGINE guests Aida Fernandes (executive director), along with Dr. Deborah Marshall and Sandra Zelinsky, co-leads of the Patient Engagement Subcommittee. You all wear different hats with your lived and work experience backgrounds, but you are all laser focused on partnering to better manage inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS). Your IMAGINE network is shedding some much needed light on these puzzling and troubling chronic disorders. I have seen a close friend's partner struggle and stumble with Crohn's disease, one of the inflammatory bowel diseases. Needing to be hyper vigilant with what he eats and ever mindful of maintaining a work life balance is difficult. And he pretty much had to learn by trial and error. He recently passed away from pancreatic cancer, but I know he would be extremely delighted to see that the Mind And Gut Interactions Cohort (MAGIC) Study focuses on more proactive and preventative strategies than on reactive treatment regimes. WOWZA! Almost 8000 subjects were recruited into the pan-Canadian MAGIC study by the IMAGINE network. Participants were retained in the study in high numbers even though they had to submit quarterly blood, stool, and urine samples. How did IMAGINE accomplish this incredible feat? With the aid of a very strong, very engaged, very well trained and supported patient partner group. 40 patient peer-to-peer mentors conducted face-to-face and/or online virtual contacts with the participants in the study to encourage and support them. The patients engaged as partners in the research had flexibility in how and when they could contribute to the study. The IMAGINE network met patient partners where they were at and what they were comfortable with contributing. Anna compared this to Roger Stoddard's choosing patient engagement tasks from a menu analogy, because appetites are all different when it comes to the amount of engagement one can or will want to do. Patient engagement was kept strong by relying on this flexibility, plus good support, plus capacity building and first and foremost, once again, respectful relationship building. The unique but equally valuable voices and perspectives of the 4 Ls that Linxi Mytkolli told us about in asPERusual's Diabetes Action Canada podcast delivers the lived, the lovers, the learners (so the academic leads) and the laborers (all the clinicians) blended together to make this one strong, patient centric study. Patients and providers also had access to tools necessary to support their preferred level and type of engagement. Anna has posted a really good list of these resources recommended by today's guests. In particular, they highlighted the free online patient and community engagement research (PaCER) program, a one year certificated course from the University of Calgary. It teaches patient research partners how to create, conduct, and even lead a research project. In fact, that's the requirement for the certificate. Another way patient engagement was supported reached beyond taking part in the research study process. IMAGINE empowered patients to share their lived experience stories. Having just completed this task myself, I sure wish I had access to that training with the help from patient mentors like Sandra. Storytelling is harder than it looks. All in all, this is a very strong study with a very strong network of networks and a very strong method of patient engagement. I wish the team much success. Miigwech. PERsonally SpeakingMy three big takeaways will sound pretty familiar. The secret sauce to any successful patient engagement in research platform is to overcommunicate at the start. Make friends. Take all the time at the start to develop the bidirectional relationships needed to build a strong team of friends. Teamwork makes the dream work. Know the end game goal. List the tasks needed to get there, and then collaborate as a team to “match the hat to the task.” Impressed IMAGINE seems to have no power differential barrier at play. Regular feedback and ongoing evaluation can help maintain a productive and respectful partnership. If we focus research funding on lived experience patient priorities like MAGIC's mind-gut biome connection study, it not only enriches the research process, but also ensures that the outcomes are more relevant and beneficial to those who need them the most. Patients are the alpha and the omega of health care. Thank you to SPOR Strategy for Patient-Oriented Research for all your resource allocation for studies that bridge the gap between science and experience. Working together, maybe we will get more proactive strategies to better self-manage many chronic diseases. I'm very optimistic MAGIC will make some magic happen for patients with IBD and IBS.Anna:Thanks so much Kathy for sharing your onePERspective. I think this is my favorite one yet. Something that really also stood out for me about IMAGINE was the pivotal role that patient research partners play in shaping research within the network and throughout the research cycle. The MAGIC study is such an impressive undertaking, having enrolled almost 8000 patients in a Pan-Canadian longitudinal venture. To see meaningful and active engagement interwoven into it is beyond heartening and definitely something we can all stand to learn from. If you haven't checked the original episode out, it is Season 3 Episode 1 of asPERusual and can be accessed through visiting our website asperusual.substack.com or wherever it is that you download your other podcast episodes from. If you do visit the website, be sure to check out the interactive transcript from this, and other episodes, as well as to subscribe to the podcast's newsletter! As always, you can reach me by emailing anna.asperusual@gmail.com or by adding me to LinkedIn by searching Anna M. Chudyk – CHUDYK.In two weeks I'll be releasing Season 3 Episode 2 of asPERusual, where I sit down with Melanie Talson and Cathy Woods from the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) network. Be sure to tune in if you want to learn about their systemic approach to patient engagement, including ways in which the six R's ( Respect, Responsibility, Reciprocity, Relevance, Relationships, and being Real) permeate all aspects of the network's work, and the role of the network's Indigenous Peoples' Engagement and Research Council (IPERC) in shaping engagement and care for Indigenous Peoples and communities across Canada.Until next time, thanks again for tuning in and let's keep working together to make patient engagement 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

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 of youth voices sharing their lived experiences to improve patient care. Bloodwork is frequent when you are undergoing chemotherapy. Veins are exquisitely tenders making the draws quite painful. A 7-year old lad in an adjoining cubicle was to receive his bloodwork. He had his arms folded. He refused to unfold them because he saw the technician was not going to use the special equipment for sensitive veins. He stood firm repeating; “I will not unfold my arms until you bring in the “butterfly” – a much smaller, gentler apparatus for blood draws. Asserting his lived experience knowledge and insisting on more responsive patient-centric care, he helped me dealing with my own sore veins and dread of the draw. I asked for, and got, the butterfly too! And that made all the difference. I was so impressed by, and eternally grateful for, that young lad for voicing his concerns and correcting a gap in patient care.CHILD BRIGHT examines many gaps in (1) early identification; (2) innovative technologies and (3) rehabilitation with input from the entire team. Parents like Carrie, and patients like Gillian, are co-investigators on research projects surrounding their three themes that were developed in partnership with parents and youth: projects that optimize developmental outcomes; projects that integrate mental health support into care for patients and their families; and projects that redesign health care services to be more responsive to family needs.Now entering CHILD-BRIGHT's second phase, the focus will shift to implementing the knowledge gleaned during the past six years in Phase One. I'd like to learn more about their individualized knowledge translation hubs targeted either for clinicians, for parents, or for policymakers always ensuring the concepts equity, diversity, inclusion, decolonization and Indigenisation are integrated into the hubs and in all the research activities they undertake.As for patient involvement, Carrie describes her role as the “connector” between the Steering Committee, the other Patient Liaisons and the public at large. Similarly, I've referred to my PPI (Patient and Public Involvement) role as that of a bi-directional “honey bee”. Happy to see how their use of an expert to help them deliberately recruit new members thru targeted social media sites really paid off. And using their “matching tool” then fits the right Patient Liaison to the right project based on the specific information PWLE's are asked to supply in their onsite application.Gillian describes her role on the Youth Advocacy Council as that of a consultant – or collaborator - providing the voice lived experience on all committees and working groups or advising researchers. Really great to hear Gillian tell us how much her Youth group has grown and how they now have incorporated Liaison Partners from 13 First Nation groups. CHILD-BRIGHT's uniqueness centres on in its focus on youth and the extent of its inclusion of youths with lived experience in all aspects of engagement in research. And CHILD-BRIGHT shares the common struggles of other patient engagement in research (PER) entities surrounding recognition, remuneration and evaluation of success. It is likely even more challenging dealing with special issues working with youth as well as working with adults. Their heart is in the right place. They are united in purpose and their focus is on an underserved group: children and youth with brain-based developmental disabilities. I am grateful this podcast enlightened me about CHILD-BRIGHT. Thank you Anna, Annette, Carrie and Gillian!PERsonally Speaking1, Really appreciated learning about a patient engagement group of children and youth and their families. Really impressed at the depth and breadth of youth participation – even as co-authors of research!2. Again, we encounter the common theme of the importance of authentic bi-directional relationship building and the patience of time and whole lota money needed to build a successful and meaningful collaboration between patients and practitioners and policymakers.3. And again we see a PER group still working out the fine details surrounding recognition, remuneration and evaluation of engagement.Points to PonderFinal words to close out season 2. Each specific engagement entity will always have their own special priorities to deal with in their own special way, But all sites have common features of PER that I hope we can amalgamate into one, standard pan-Canadian PER agency. This common entity would have a repository matching a researcher request with best-fit, vetted PWLEs. And it would include dedicated PER Navigators to handle the administrative tasks for both the PWLE's and the researchers.Wishing you all a happy, safe and healthy, fun-filled summer!Anna:Thanks so much Kathy. I can't thank you enough for all of the time and energy you have poured into onePERspective and the wonderful insights that you have brought to all of us. Thank you to all of our listeners; to those of you who have helped spread the word about the podcast and sent me supportive emails; to our guests who have shared their time, experiences, and wisdom; to Bryn Robinson and Roger Stoddard who were my original cohosts and helped make this podcast a reality; and to Bre Kelly and Sasha Kullman who have been huge helps behind the scenes. Lastly I would also like to thank my mentor Annette Schultz and the CIHR POR Awards - Transition to Leadership Stream Phase 1 and 2 awards for their support in helping me establish my patient-oriented research program, which led to this podcast.I hope you all have a great summer and I look forward to coming back with Season 3 sometime in the fall. If you haven't done so already, I encourage you to subscribe to our podcast's newsletter by visiting asperusual.substack.com so that you are kept up to date with podcast updates, or to add me to LinkedIn or X by searching Anna M. Chudyk on your web browser as I also post notifications there. If you have any ideas on how we can make asPERusual even better next season, be sure to send me an email at anna.asperusual@gmail.com. Big hugs to you all and until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. 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 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 inform decision makers of POR experiences. A whopping 262 patients engaged or wanting to become engaged in research responded. What set this survey apart from the many existing surveys is that the questions were asked and supplied solely by patients for patients. As Donna explained, “the questions we asked were not the cookie cutter, usual survey questions. We asked questions harvested from the perspectives of what patients identified themselves as important to understand.” As a result, they captured new data, opening the door to better understanding the patient perspectives engaging as a partner in research. Some examples of questions included:When you contributed, did you feel your voice was heard? Was your input valued and acted upon? Did you feel comfortable asking questions? Did you experience covert or unconscious bias for not being an academic? Did you feel you were making an impact or made an impact? Was your role integral, significant, or tokenistic? The answers did not surprise me. Overwhelmingly, a huge number of the 262 respondents felt that they were discriminated and disrespected because they were not academics. They did not feel their voices were heard as equals. The traditional research landscape does not presently equally value the voices of all its contributors. But in my experience, I believe they are fully on board to transforming that ecosystem by learning from us. I commend Alice and Donna and their team for capturing data to help shift this paradigm. Another strong survey finding that will come as no surprise, but is now supported with strong evidence, is that the research community is a closed shop that is not great at communicating with the public community. We need to change the research community's SOP, or standard operating policies and procedures, in order to change the research landscape. I really like the way Alies organized the findings at three levels of research environment to consider for changing: At the micro level, the research team most closely aligned with the patients engaged in research. At the meso level, administrators at universities and other research institutes. They are removed from the action, but are tasked by the research funder to manage the research grants. This is a major stumbling block and a bottleneck for researchers who want to and do engage patients in research — the time consuming, complicated, creeping barrage of administrative bureaucracy. At the macro level, the major research funders like the Canadian Institute for Health Research are next level removed from understanding and championing POR. Yet they are the ones who set out the research grant requirements, the timelines for deliverables, and the criteria for who should and who should not be funded. There are many other interesting and innovative suggestions for this transformation in the research ecosystem that can be found in the Patient Advisor Networks' pan-Canadian Patients Engaged in Research survey. If you'd like to check it out for yourself, the name of the report is Reimagining the Research Landscape. Personally speaking:The patience of time needed to build meaningful and respectful relationships is the cornerstone to successful patient engagement in research. Funders need to acknowledge its importance and to fund this fundamental first step. We must flatten the power dynamics between the patients and researchers by meeting people where they are at. Bring your authentic whole self to the table. Listen attentively and be open minded. We are all more than just our health condition. Nothing about me without me is the ticket for patients to rightfully participate in patient centered research.Anna:Thanks so much Kathy. One of the many things that I also enjoyed about Donna and Alies' episode was what I affectionately term “bonus content.” These were additional insights into important topics that flowed out of our conversations, such asexpected and unexpected benefits of patient-led research;tips for how to support patient partners in bringing diverse perspectives to engagement opportunities through the establishment of patient advisory councils comprised of large numbers of patient partners. This is an idea I've been looking to incorporate into my own research program and it was great to hear more about it in action.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. 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

OverviewIn 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 guestsDonna 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, andwho 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 address this inequity. Yes, health care is a provincial jurisdiction. But once again, if the pandemic taught us anything, we go further, faster, better when we communicate and collaborate and share our findings as well as our resources. Sharing is caring.The biggest takeaway for me from the SPOR Data Platform presentation is their laser focus on making data much more accessible to researchers and decision makers. Data is a powerful tool. The choice about how it gets deployed is ours because data drives decisions. A streamlined, simplified process for requesting comparable data from across the country will create new opportunities for researchers, says Dr. Kim McGrail, scientific director of the SPOR-DP.Personally speaking:If the pandemic taught us anything, it was that when we combine scientific and clinical with public expertise in a collaborative, interdisciplinary environment, we can move at warp speed to invent and apply new treatments and technologies. Can SPOR's jurisdictional linkage of population level data, also known as Big data, be a game changer for health research and researchers?SPOR combines a diversity of voices that span a variety of disciplines, geographies, cultures, and behavioral experiences with the scientific and clinical experts. This is a strong and powerful management strategy for the data platform.I have heard it said you can have data without information, but you can't have information without data. Did we all watch the movie Moneyball, about the down and out Oakland A's baseball team? They took a chance on a statistician, Billy Bean, who collected and analyzed data on every player. At first, everyone laughed at that idea, but we all know the outcome — data management proved a powerful tool in sports. Can you think of any team that doesn't do that today? So we have a robust data management tool here in SPOR-DP and I'm glad we have a centralized data management system going on.Anna:Thanks so much Kathy. I always love listening to your key reflections and their applications to moving our health system forward. Something that I have been reflecting on since we shot and aired SPOR Data Platform's episode is the importance of bringing patients and public into conversations about their health data, both to help direct, and address fears and uncertainties about, these directions moving forward. Nothing about us, without us, as you always say Kathy. And boy does this ring true here. The SPOR Data Platform definitely deserves to be commended for all of the patient and public outreach they embed into their activities.Their work also makes me think of other great patient public outreach that we have going on in this space, like through the PXP – for patients, by patients – initiative led by my friend and asperusual season 1 guest Dawn Richards, which holds regular webinars that feature patients and the public talking about key issues related to patient engagement in research. It also makes me think of all of the great work that our friends at the Patients Advisors Network have been doing to help bring and support patients and the public into the patient engagement and healthcare advisor realms.This actually brings me to our next episode, which will be airing on Monday, June 3. In it, the ever awesome Alies Maybe and Donna Rubenstein will be coming on to discuss the Patient Advisor Network's recently released report titled, “Reimagining the Research Landscape.” The report is freely available if you go to patientadvisors.ca. I know that this episode is a bit of a sidestep from our season's theme of focusing on SPOR-funded entities, but the report is affiliated with SPOR's refresh activities and really brings to the forefront patient and public perspectives on the future of patient engagement and patient-oriented research in Canada. If this topic is of interest to you, then you should also consider reading a study that my colleagues and I recently published in BMC Health Research Policy and Systems titled, “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.” It's free to read through the journal, so give it a Google.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. 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 patient engagement. What is our value? How effective are we? What has worked well? What do we need to re-calculate? I was impressed that DAC is working at two levels with their researchers including the patient partners and with their policy makers to measure the impact of patient engagement in research. With input from all stakeholders, they have Key Performance Indicators (KPIs) - quantitative and qualitative measures of effectiveness. Tracy and Linxi, you certainly have shown DAC has a very robust engagement strategy. Personally speaking, points to ponder 1.    I love, love love Linxi's four “L's”! What a great way to describe the key stakeholders involved in Patient Partnering. I think one more L needs to be in the mix…The LEADERS – the decision makers and the funders – the organizations who give the projects their fuel. Maybe LEADERS feel they need to stay at arms length for impartiality. But I believe PER platforms would be better served if the LEADERs learned more about and better understood patient engagement in research. Research pivots on funding opportunities.2.    PER costs, including administrative tasks, should become a specific line in the budget funding formula. PER management is often relegated to an add-on status – a strain on an already stretched research budget. And the time to administer PER tasks is usually piled onto an already overwhelmed researcher.3.    Every patient engagement platform podcast so far has stressed the need to take the time to build a safe space where equitable relationships can flourish. It's all about respect. And it takes a patience of time to do it right.4.    If every co-design research group could hire a highly educated, highly skilled, focused patient engagement navigator like Diabetes Action Centre has, that would be a dream come true!Anna:Thanks so much Kathy for your onePERspective. One of my many favourite things about the Diabetes Action Canada episode was all of the thought that Tracy and Linxi have clearly put into creating environments that truly foster meaningful and active partnerships. I also really appreciate their ability to provide very in-depth and descriptive answers and then scale back and also provide a high level summary of the big picture, increasing the accessibility of their messages to a wider audience. If you haven't listened to the episode yourself, something else that I want to point out is that we spent a lot of time discussing evaluation in the context of patient engagement. Here, Linxi and Tracy did a great job of providing useful information about how they frame and measure different key performance indicators within the network. They also shared their intuitive approach to asking patient partner focused evaluation questions such as “what do you hope to bring to this opportunity” and “what do you hope to get out of this opportunity.” This direct and meaningful approach towards planning and evaluating patient engagement opportunities is something that I'm definitely going to bring forward in my own work. Looking ahead — on our next episode of asPERusual, slated for release on May 12, I will be speaking with guests Catherine Street, Frank Gavin, and Kim McGrail from the Strategy for Patient-Oriented Research Data Platform. We'll be talking about their work to engage Canadians in critically considering and reimagining the possibilities for their personal health data! Until then, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. 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

Episode overviewIn 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 guestsTracy 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 messagesFor me, the three key messages gleaned from Yvonne and Annie's SPOR-NTE presentation are: Know yourself and be clear in articulating what you can contribute to the research. Shakespeare told us centuries ago: “To thine own self be true.” Bring your authentic self when partnering in research. Academic knowledge is always enriched and enlightened when the research is grounded and relevant and bridged with the authenticity of real world experiences. Interdisciplinary collaboration: More and more and more in the 21st century, we're going to see this as the norm for conducting research. We can all benefit from training to join forces and to engage collaboratively in patient-oriented research. Critical thinking skills and creativity are not the exclusive realm of the academic experts. Amalgamating lived experience expertise into the PER4POR research landscape will move us beyond the traditional ways of thinking about and conducting research in separate silos. Patients, researchers, clinicians and policymakers can build capacity and research with, by, and for patient partners with access to this powerful pan-Canadian SPOR NTE support. Personally speaking, points to ponder Yvonne and Annie, like all the other podcasters before, have told us how to successfully interact. Bring your authentic self. Be open minded. Keep calm and steady and results-focused. Attitude is everything. Attitude, not aptitude, determines altitude. Interdisciplinary, interprofessional and inclusive research is becoming the modus operandi for the 21st century. Are we able to build equitable partnerships or do we need some extra training? Building relationships seems to be the secret sauce for successful patient engagement in research. Will the NTE be able to equip the different stakeholders with effective collaborative communication skills? As of today, SPOR's ambitious pan-Canadian Network of Networks National Training Entity is just a repository of PER4POR resources and tools. I dream of growing the training entity to include POR navigators charged with managing all PER4POR activities. A navigator passerelle will be of an enormous bridging benefit to all POR stakeholders. What is needed next for NTE to hire navigators to train, to connect, and to mentor patient partners engaged in research and the researchers wanting to engage them? How can we encourage research, public, and private funders to financially support a navigator agency? How can we show them this agency would decrease time and increase the efficiency for researchers burdened with these added PER4POR tasks right now?Anna:Thanks so much Kathy! You always manage to distill episodes so nicely. I know that a major component of engagement is interpersonal connection, but I wonder if there's some role for artificial intelligence to help make your navigator idea a large scale reality? Otherwise, or maybe in tandem, I think that a peer-to-peer individual or group buddy system could also help make your idea a sustainable one. Lots to think about, which is one of the many reasons I love your segment. Thanks so much for inspiring it and always making time for it.I'll be back in 2 weeks, so on April 22, with season 2 episode 6 of asPERusual. On it I will be talking with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada, a SPOR network focused on bringing patients, their caregivers, and researchers together to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns. If you're looking for something to keep your patient engagement in research juices flowing until then, I've got just the thing for you. Our friends and colleagues at the Patient Advisors Network have just released a report titled, Reimagining the Research Landscape. In this report, they offer insights from 262 patient and caregiver partners about how CIHR/SPOR can foster and provide support at all levels to better support patients and caregivers in partnering in research. When you're really inspired after reading this report, consider checking out a study by my colleagues and I that applied a participatory process to investigate future directions for Canadian patient engagement in research. Its titled “Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers” and free to everyone to read in a journal called BMC Health Research Policy and Systems.Until next time, please be sure to check out our website (asperusual.substack.com) for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. While you're there, if you take the time to leave us a positive review, it will help others find the podcast as well. Lastly, for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in! Have a great couple of weeks! And until next time, let's keep working together to make patient engagement in research the standard or As PER Usual. 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

Episode overviewEpisode overviewIn 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 guestsYvonne 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

Episode overviewIn this episode, we are joined by Norm Buckley, the Scientific Director, and Delane Linkiewich, a patient partner, of the Strategy for Patient-Oriented Research's Chronic Pain Network. Norman and Delane discuss the history of the network, including how it originated from years of grassroots work carried out by trail blazing physicians who innately understood the importance of patient partnership and experience. They also share details of the network's formation, its open-minded approach to creating a community of support that truly listens to patients and incorporates their input into the research process, and engage the listener in critical thinking around the importance of patient partner compensation.Listen here or wherever you download your podcasts!Meet our guestsDelane Linkiewich: has been living with chronic pain for over 15 years and is a passionate advocate for people living with pain and patient engagement. Delane is currently a PhD student in the Clinical Child and Adolescent Psychology Program at the University of Guelph where she conducts patient-oriented research on peer support for pediatric chronic pain. She has been a member of the Chronic Pain Network since 2018 and sits on the Patient Engagement Committee, having co-chaired this committee for 2 years. Norman Buckley: A faculty member since 1988, Dr. Norm Buckley is currently professor emeritus in the Department of Anesthesia, Michael G. DeGroote School of Medicine, McMaster University, Hamilton. Dr. Buckley provides chronic pain care through the DeGroote Pain Clinic at McMaster University Medical Centre. Dr. Buckley established the Michael G. DeGroote National Pain Centre and is scientific director of the Michael G. DeGroote Institute for Pain Research and Care, since 2015. He is Nominated Principal Investigator for the Chronic Pain Network, with over $30 million in funding this national research network was created to change the way pain is managed in Canada. 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 episode, we meet Dr. Stacey Love, Director of Virtual Physiotherapy and Rehabilitation at Saskatchewan's Virtual Health Hub, and an Assistant Professor at the University of Saskatchewan's School of Rehabilitation. She's also involved with the Saskatchewan Centre for Patient Oriented Research. You can see more of her recent publications here, along with links to her labs: Musculoskeletal Health and Access to Care: https://cchsa-ccssma.usask.ca/mhac/ Virtual Care and Remote Presence: https://research-groups.usask.ca/remote-presence/index.php#Healthcare Stacey Lovo remembers the bitterly cold day in December 2012, when two Indigenous women from northern Saskatchewan stepped off the bus in Saskatoon. One had traveled 12 hours, the other seven, both to see physiotherapist Stacey Lovo for back pain.   “It was a big undertaking for them,” said Lovo. She said one woman was forced cut her appointment short, to catch the last bus returning north.   The other woman stayed in Saskatoon to treat spinal pain stemming from what Lovo characterized as a ‘very difficult and scary problem.'   “This was devastating for many reasons,” said Lovo who remembered her patient was distraught, unable to return home to care for her young children.   That glaring disparity in healthcare access propelled Dr. Lovo into action. She returned to the classroom, and earned her PhD in Rehabilitation Science, specializing in low back disorders.   “If you're rural and remote resident or if you're Indigenous, your chances of having back pain are 30 percent higher than an urban person who's non-Indigenous,” said Lovo.   Lovo said long waits for care and spending up to twelve hours in a vehicle to attend a one-hour physiotherapy consultation often aggravate spinal damage — rather than healing it.   “When we're traveling that distance, we're undoing everything that's done in the session,” she said.   Working closely with people in Pelican Narrows and the Peter Ballantyne Cree Nation, Dr. Lovo began testing virtual consultations and in-person treatments, advocating for a hybrid model of healthcare.   "These projects are all community driven,” she said. “They're led and driven by the strengths and knowledges from the communities."   Her team's innovative use of Remote Presence Robotics in partnership with local nurse practitioners  in Pelican Narrows demonstrated a successful model of team-based virtual physiotherapy, connecting patients hundreds of kilometres away from health providers with care.   Local health providers are the key, Lovo said.   “Taking reflexes and testing for sensation and muscle strength are done by the nurse on the other side,” said Lovo.  “They have incredible rapport with the patients. They know their families.”   When the pandemic amplified the need for virtual care, Dr. Lovo, Dr. Brenna Bath  and Dr. Lovo's graduate students met the challenge with innovation.   Participants in her back pain study reported their outcomes were noticeably better. Many asked to continue with more treatments.   Dr. Lovo's work goes beyond healthcare delivery; it is a commitment to fulfilling treaty obligations and ensuring equitable healthcare access for Indigenous Peoples.   “Canada's promise to First Nations peoples was that medical care would be taken care of, and so we are  working with communities to try things out that will allow us to provide it,” she said.

Dr. Alex Spyropoulos (“Dr. Spy”) is a Professor of Medicine at the Hofstra Northwell School of Medicine as well as System Director of Anticoagulation and Clinical Thrombosis Services for the multi-hospital Northwell Health System. In addition, Dr. Spy is a Professor of the Merinoff Center for Patient-Oriented Research as part of the Feinstein Institute for Medical Research. As a thrombologist, Dr. Spy studies blood clots. Many people worldwide are either at risk for blood clots or have existing clots. He focuses on venous thromboembolism primarily in the lungs and legs. These blood clots could cause morbidity or mortality, and many people are not familiar with the risks, common symptoms, or the situations in which clots may occur. Outside of work, Dr. Spy loves spending time with his wife and his young kids. Lately, they've been enjoying apple picking, hay rides, pumpkin carving, and apple carving. His other hobbies include sailing, snowboarding and mountain biking. He received his MD from the University of Pennsylvania School of Medicine, and he completed his internship and residency in internal medicine at the University of New Mexico Health Sciences Center. Dr. Spy is a recipient of the Lovelace Clinic Foundation Excellence in Education Award, as well as a Fellow of the American College of Physicians, the American College of Chest Physicians, the International Academy of Clinical and Applied Thrombosis/Haemostasis, and the Royal College of Physicians in Canada. In this interview, he speaks with us about his life and science.

Welcome to the very first episode of As PER Usual, a podcast for practical patient engagement. To start our journey, we have two wonderful guests, Dr. Dawn Richards and Dr. Stuart Nicholls, who - along with several other colleagues - published the "Ottawa model" for patient engagement. They share with the listeners how patient engagement can be embedded in our existing structures, and why it takes more than money to make patient engagement in research move from fiction to fact. Dr. Stuart Nicholls is the Strategy for Patient-Oriented Research (SPOR) Program Facilitator in the Office for Patient Engagement in Research Activities (OPERA) at the Ottawa Hospital Research Institute. In his capacity as SPOR Program facilitator Stuart consults with researchers to provide methodological guidance regarding all aspects of Patient-Oriented Research. With a PhD (Analytical Chemistry) from the University of Alberta, Dr. Dawn Richards has worked in a variety of roles over the past 20 years, however her diagnosis with rheumatoid arthritis over 15 years ago started a journey to combine her passion for science with making the most of her diagnosis. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in 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

Audrey Zucker-Levin estimates it's been more than 30 years since she first poked her head into a researcher's office at New York City's Hospital for Special Surgery. Back then, the clinical therapist spent her days treating hospital patients, stopping by the laboratory after her shifts. "I was very intrigued by the prosthesis, by the mechanical and the physiologic connection," said Zucker-Levin. "I kept basically showing up any time I had spare time," she said. "They just put me to work." After long hours spent studying patients in early video work, Zucker-Levin recalled studying muscle movement and function through patients' knees, hips and lower-leg placement. She learned more about missing feet, and became curious about the neurological connections producing phantom sensations -- messages trying to connect and control the places where limbs once grew.  Zucker-Levin went on to study prosthesis innovations, and welcomes today's gait lab advancements.  "We were very dependent upon the technology of the prosthesis, as well as the ability of the person, and we were trying to match them," she said. "It was fascinating work." Zucker-Levin enroled in a part-time doctoral program at NYU, but didn't complete it right away. She followed her husband to Bethesda and a fellowship at the National Institutes of Health. After a few years, Zucker-Levin, her husband and two young sons relocated to the University of Tennessee in Memphis. She took on a faculty position there, determined to complete her PhD. "We had a babe in arms and a toddler," she said. "And I flew back and forth to New York every other week with the two little ones." Today, she empathisizes with parents who are students. She admits it was not easy finding balance as a full-time faculty member, as a part-time doctoral student, and as a full-time mother.   “But I had lots of support," Zucker-Levin said. "I really enjoyed the research. I really enjoyed that ability to try and figure out how to help people function easier, or better." After she and her husband moved to Saskatoon in 2017, Zucker-Levin was hired as a professor at the University of Saskatchewan's School of Rehabilitation Science. The move north gave her research a different direction as she pivoted from helping high-functioning athletes and dancers, to helping more sedentary patients after amputations.    With support from the Saskatchewan Centre for Patient-Oriented Research, and the Saskatchewan Health Research Foundation, her team now focuses on improving function in people affected by lower-leg amputations. Zucker-Levin started by assessing rates of amputation in Saskatchewan compared to other countries. From there, her team went on to use MRI scans to assess phantom sensation, watching the neurological connections the brain uses to keep or regain function; they're also experimenting with exercise programs aimed at using phantom sensations to help patients heal, along with studying a host of other factors affecting post-operative care. She's the principal investigator in “Wheeling to Healing”; research aimed at healing and preventing diabetic foot ulcerations, and she currently has four publications set for review.

In this episode, Nicole asks Stephanie about her experience facilitating patient oriented research at the Gynecologic Cancer Initiative. They talk about some of the important learning lessons, strategies and tips researchers and patient partners can use when starting out on their patient engagement journey. They also go through some amazing resources to get more involved with patient-oriented research (for both patient partners and researchers!) To learn more about patient-oriented research and how you can get involved check out these resources: GCI Patient and Family Advisory CouncilBC Cancer Patient Experience Program BC SUPPORT Unit REACH BC CIHR Strategy for Patient Oriented ResearchFor more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.caWhere to learn more about us:Twitter - https://bit.ly/3jsViHMInstagram - https://bit.ly/3dRQsCFFacebook - https://bit.ly/3knUgOw

How many psychologists have lived experience of nonsuicidal self-injury (NSSI)? What biases should mental health professionals with and without a history of self-injury keep in mind when treating or supervising someone who has lived experience? In this episode, Dr. Victor shares preliminary data that she has just begun analyzing regarding the prevalence rates of mental health difficulties and self-injury among psychologists and psychology graduate students. She provides guidance about how mental health professionals can provide appropriate care to therapy clients and supervision to trainees who have lived experience of self-injury and self-harm. She also discusses how individuals with lived experience can be involved in research and teaching.Learn more about Dr. Victor and her work in the Tracking Risk Over Time Lab (TRTL) at https://www.depts.ttu.edu/psy/people/svictor/ and her website at https://www.sarahevictor.com/. Follow her on Twitter @sarahevictor. Below are links to some of her research and the resources referenced in this episode:Psychologists with lived experience of non-suicidal self-injury: Priorities, obstacles, and recommendations for inclusion (click here for the free version of the author's manuscript)LiveThroughThis.orgStrategy for Patient-Oriented Research (Canadian Institutes of Health Research)Patient-Centered Outcomes Research Institute (PCORI)ClinicalTrials.govFollow Dr. Westers on Instagram and Twitter (@DocWesters). To join ISSS, visit itriples.org and follow ISSS on Facebook and Twitter (@ITripleS).

Back in December 2020, Jennifer moderated a panel for Child-Bright titled "Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research". Child-Bright and the panelists generously agreed to let us use 'tape' from that session to explore some of the themes we thought our listeners would find especially interesting. (The panelists are: Elizabeth Stephenson, Franco Carnevale, Gillian Backlin, Antonia Palmer, Thierry Lacaze-Masmonteil. Profiles below.) In this episode, Jennifer and Emily pick up one of the discussion threads to consider whether there might be a role for Research Ethics Boards (REBs) in supporting meaningful patient partnership. (The video recording of the original Zoom event is openly available. You can watch it here. In the session we covered so much more than we were able to address!  It's not required in order to enjoy this episode, but we do encourage everyone to watch.) [download transcript] Mentioned in this episode: Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research Child-Bright Network Ethics Guidance for Developing Partnerships with Patients and Researchers The Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2018) Reading that challenges common understandings about the role of REBs: The Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review How did we ever get into this Mess? The Rise of Ethical Regulation in the Social Sciences Regulating Creativity: Research and Survival in the IRB Iron Cage Against Research Ethics Committees "We need more critical thinking in clinical bioethics if patient autonomy is what we seek" Panelist Profiles: Elizabeth Stephenson is a Professor of Pediatrics at the University of Toronto and the Section Head of Cardiac Electrophysiology at The Hospital for Sick Children. Her research focus on electrophysiology has led to clinical investigations in cardiac resynchronization- and implantable defibrillator therapies. Additionally, she serves as the Chair of the SickKids' Research Ethics Board. Franco Carnevale is a nurse, psychologist and clinical ethicist with research interests in pediatric ethics. In addition to a number of academic appointments at McGill, he is the founder and principal investigator for VOICE (Views On Interdisciplinary Childhood Ethics) to advance knowledge and practices relating to ethical concerns in childhood. Gillian Backlin is a technical writer, an active member of CHILD-BRIGHT's National Youth Advisory Panel, and a Patient and Family Ambassador Liaison  at the  BC Children's Hospital's Sunny Hill Health Centre. Antonia Palmer is actively involved in the realm of pediatric oncology. In addition to being the co-founder of the Advocacy for Canadian Childhood Oncology Research Network, she founded Neuroblastoma Canada, and is a board member for Childhood Cancer Canada. She also chairs the Patient and Family Advisory Committee of the CHEER (Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research) initiative which aims to streamline and improve the research ethics review process to enhance and expedite child health research across Canada. Thierry Lacaze-Masmonteil is child health and wellness researcher. He is a Professor of Pediatrics at the university of Calgary and is the section head of Neonatology at the Cumming School of Medicine. Additionally, he serves as the scientific director of MICYRN - the Maternal Infant Child Youth Research Network and is a co-principal investigator on the aforementioned CHEER initiative.

What an episode! An extraordinary conversation with Terri Fleming, Unit Director of Research Ethics BC. Learn about Research Ethics here in BC and how Terri and her team had to pivot, FAST, when COVID hit. Decision makers, Clinicians , Researchers and Patient Partners will find this interview incredibly informative and motivational.

To wrap up the special COVID series, the BC SUPPORT Unit and SPORcast hosted a Virtual Town Hall on July 9, 2020. Facilitated by Stirling Bryan, President of Academic Health Sciences Network and Lisa Ridgway of SPORcast. The event brought together, Megan, a patient partner, Danielle, the new Scientific Director for BC SUPPORT Unit, Stefanie with REACH BC and Alison, Director of Clinical Trials BC discuss opportunities to get involved in supporting COVID-19 related research.

The 1st episode of our Stronger Together: Adapting Patient Oriented Research During COVID-19 Virtual Town Hall and Podcast Series with Stirling Bryan, in his new position at the helm of the BC Academic Health Sciences Network, and Danielle Lavalee, BC SUPPORT Unit's new Scientific Director.

Why is Patient Oriented Research so important? What is the IMAGINE Network? What is the CIHR SPOR and how is it helping patients with IBD? What is the role of patient partners in IMAGINE? Answers...

Welcome to SPORcast inaugural episode! In the first segment, Bev and Lisa will discuss Patient Oriented Research and the what, how and why they got involved. The second segment is a great conversation with Stirling Bryan, the Scientific Director of the BC SUPPORT Unit and Methods Clusters.

Listen to a podcast about TRAM, an initiative started by the Canadian Institutes of Health Research and the Graham Boeckh Foundation. TRAM or the Transformational Research in Adolescent Mental Health (TRAM) initiative, was the first of the Strategy for Patient-Oriented Research programs, providing $25 million over 5 years to foster collaboration and placing youth and their families at the centre of integrated youth services. It lead to a pan-Canadian research and evaluation network with 14 sites within six provinces and one territory. Several integrated youth centres have developed out of this initiative, recognizing the need to connect people in these communities.   To view the article, click here. To learn more about TRAM, click here.  

In this podcast, Dr. Kirsten Patrick, deputy editor for the Canadian Medical Association Journal, discusses an editorial she co-authored on the topic of patient-oriented research. She is joined by her co-authors, Diane Aubin and Maryam Kebbe. Diane Aubin is an Associate Director with the Alberta Strategy for Patient-Oriented Research support unit and works at the University of Alberta in Edmonton. Maryam Kebbe is completing her PhD in the Department of Pediatrics at the University of Alberta. Her research focuses on health behaviours of teens with obesity. They discuss a formal commitment by the CMAJ Group to publish a collection of research articles on patient-oriented research in the journal CMAJ Open www.cmajopen.ca Patient-oriented research collection author guidelines: http://cmajopen.ca/site/authors/patient-oriented-research-collection-author-guidelines.xhtml They co-authored an editorial article published in the Canadian Medical Association Journal. Full editorial article (open access): www.cmaj.ca/lookup/doi/10.1503/cmaj.180587 ----------------------------------- Subscribe to CMAJ Podcasts on Apple Podcasts, iTunes, Google Play, Stitcher, Overcast, Instacast, or your favourite aggregator. You can also follow us directly on our SoundCloud page or you can visit www.cmaj.ca/page/multimedia/podcasts.

Dr. Alex Spyropoulos (“Dr. Spy”) is a Professor of Medicine at the Hofstra Northwell School of Medicine as well as System Director of Anticoagulation and Clinical Thrombosis Services for the multi-hospital Northwell Health System. In addition, Dr. Spy is a Professor of the Merinoff Center for Patient-Oriented Research as part of the Feinstein Institute for Medical Research. Dr. Spy loves spending time with his wife and his young kids. Lately, they’ve been enjoying apple picking, hay rides, pumpkin carving, and apple carving. His other hobbies include sailing, snowboarding and mountain biking. As a thrombologist, Dr. Spy studies blood clots. Many people worldwide are either at risk for blood clots or have existing clots. He focuses on venous thromboembolism primarily in the lungs and legs. These blood clots could cause morbidity or mortality, and many people are not familiar with the risks, common symptoms, or the situations in which clots may occur. He received his MD from the University of Pennsylvania School of Medicine, and he completed his internship and residency in internal medicine at the University of New Mexico Health Sciences Center. Dr. Spy is a recipient of the Lovelace Clinic Foundation Excellence in Education Award, as well as a Fellow of the American College of Physicians, the American College of Chest Physicians, the International Academy of Clinical and Applied Thrombosis/Haemostasis, and the Royal College of Physicians in Canada. In this interview, he speaks with us about his life and science.