Matters of Engagement

What exactly is the best way to engage patients in a healthcare research project? Well, it's hard to say definitively. Funders like CIHR often require patient involvement, but very little direction is provided beyond general frameworks and guiding principles. Often project teams just have to sort things out on their own. So we were curious to find out how this one particular healthcare research project handled it.  The details of the project are not really what this episode is about. Instead, our intention is to showcase a number of different perspectives about the use of patient partners within a federally funded healthcare research project. You're going to hear from two of the project's researchers (PI Dr. Noah Ivers and Celia Laur), two patient partners (Barbara Sklar and Michael Strange) - they actually call themselves Lived Experience Advisors, or LEAs - and our very own Emily Nicholas Angl, who helped to bridge communication between the two groups. In this episode: 00:17 Why Jen is hosting solo 01:06 About this research project 02:05 What’s an ”innovative clinical trial”? 04:00 Dr. Noah Ivers’ research objectives 06:15 Why this project was complex 09:34 Should patient partners do more technical work? 10:42 What are we asking patients to do? 13:20 Barbara: Engaging patients is like the Wild West! 15:57 Michael: Sharing my experience may help someone 18:03 Barbara: Engaged patients are like liaisons 20:01 Patients should do what interests them 21:28 Reflecting on constraints 22:29 Barbara: Patient advisors should not be ”partners” 24:41 Figuring things out as they go 25:44 What did the Advisors actually do? 30:34 Michael: Opioids are not inherently bad 32:24 Barbara: I get a lot of benefit from being an LEA 35:03 Reflections on Emily’s role, as Lead Advisor 38:08 Who decides what’s relevant (re patient input)? 39:05 Why research teams might want a Lead Advisor 40:29 Are there areas where patient input is less relevant? 43:01 Jennifer interviews Emily! 01:07:35 Ending and credits About the research project: The project (the results of which are not yet published) and is an "innovative clinical trial", which means that it uses methods alternative to more traditional randomized controlled trials. The research had two streams, both related to primary care - one focused on prescribing opioids, and one on prescribing antibiotics. Both of these are areas where there can be serious impacts at the individual patient level, but also in terms of public health more broadly. And particularly with opioids,. defining exactly what appropriate prescribing looks like is really tricky. And primary care physicians aren't always aware of, or maybe just aren't following, the most recent evidence-based guidelines. So this project explored if and how some specific interventions could shift prescribing behavior towards established best practices. We will continue to update the links on our website as publications and further information becomes available.  [download transcript] ------------------------------ Research project information: Project lay summary (PDF) Patient Partner Orientation presentation (PDF) Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Innovative Clinical Trials Initiative (iCT) Research background information and context: The Opioid Chapters: 11 stories that show how complex the crisis is Video: Improving antibiotic prescribing by reducing antibiotic use, duration of therapy and drug costs Webinar: Advancing Audit and Feedback Science and Antibiotic Stewardship in Primary Care Guest links: Dr. Noah Ivers profile Dr. Noah Ivers on twitter Celia Laur PhD profile Celia Laur on twitter Previous episodes featuring patient partner views: Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021 Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra October 5, 2020 Reflections on Engagement, with Lorraine, Maureen, Keith and Jess August 30, 2020 Expertise Part 2, with Francine Buchanan June 16, 2020

It's been a while since we've published an episode!  We have lots on the go these days. Come hang out with Jen and Em as we wrap up the Health Policy series and share what's next. [download transcript]   Mentioned in this episode: Public Engagement in Health Policy Project Supporting equity-centred engagement - A step-by-step guide with tailored resources Matters of Engagement presents "Podcasting for Knowledge Translation" webinar Contact us to book an exploratory conversation about how podcasting can support community outreach and knowledge mobilization! Visit our website at mattersofengagement.com  

A widely-held assumption is that all residents of Long-term Care (LTC) homes are frail, elderly and in need of sweeping protections as determined by government, policy-makers and LTC home management. The reality, however, is that residents of LTC homes comprise a diverse demographic and have a wide range of needs, interests and concerns. And across the spectrum of needs, residents have a strong desire to participate in key decision-making processes. Instead, they are often excluded.  To help address the diversity of needs and interests, resident populations in each home are represented by provincially mandated Residents' Councils. Each home has a Council (made up of residents who are interested and capable of participating) that convenes regularly and is tasked with collecting the feedback of residents, which ultimately is supposed to inform LTC home policy and management. However, there are many potential barriers to these Councils performing effectively and meaningfully.  This is where the Ontario Association of Residents' Councils (OARC) comes in. The OARC supports local Residents' Councils to communicate and perform with more impact, and also works to amplify the voices and interests of LTC residents at provincial policy-making tables.  Two of our guests, Gale and Devora, each live in a Long-term Care home in Ontario and are vocal advocates for giving residents a more meaningful voice in the development and application of policies that affect them and their co-residents.  Gale and Devora lead their own local Residents' Councils and are active members within the OARC. Our third guest, Dee Tripp, is the Executive Director of the OARC. In this episode, we discuss the realities of living in Long-term Care from residents' perspectives, and the impact of living with policies and restrictions they may not have had a say in making.  We also talk about what needs to change in order for residents' voices to become better integrated into LTC policy-making. —————– This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript]   Guest links: Ontario Association of Residents' Councils OARC on twitter Previous episodes related to "lived experience as expertise" Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa July 6, 2020 Dilemmas of Representation, with Paula Rowland June 29, 2020 Expertise Part 2, with Francine Buchanan June 16, 2020 Expertise Part 1, with Frank Gavin June 16, 2020

We're bringing conference vibes to the podcast and presenting a short series of critical work on public engagement from members of the Public Engagement in Health Policy team.  We noted themes of: community exclusion from formal engagement processes; misalignment of goals; questions of legitimacy; and challenges of conducting community-engaged research in institutional settings.  We already published the keynote from Dr. Jamila Michener on Transformative Engagement - and in true conference fashion, we're also sharing our roundtable breakout discussion with researchers Katie Boothe and Alana Cattapan!  Featuring excerpts from presentations recorded at this conference, Reimagining public engagement in a changing world: ‘If we don’t do it, who will’? An exploration of Black community agency in health policy and advocacy in Ontario - Dr. Alpha Abebe and Rhonda C. George, McMaster University Engaging deliberately: Exploring deliberation in two Canadian health systems - Joanna Massie, McMaster University The Epistemic Injustices of Public Engagement: When nothing is done to meet the demands of Nothing about Us without Us! - Dr. Genevieve Fuji Johnson, Simon Fraser University Followed by (the more interesting parts of!) our actual conversation with Katherine (Katie) Boothe (Associate Professor at McMaster in the Political Science department and a team member in the Public Engagement in Health Policy Project) and Alana Cattapan (Canada Research Chair in the Politics of Reproduction and Assistant Professor in the Department of Political Science at the University of Waterloo). We debrief on conference themes, share critical reflections and occasionally complain about the state of funding and support for community-engaged research.  If you're interested in critical work on public engagement, this episode (along with the Dr. Michener's keynote) is an excellent summary of a stellar conference! ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript]   Previous episodes mentioned: Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener November 29, 2022 Health Policy Series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe November 17, 2022 Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail September 15, 2022 Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022 Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022 Discussing Failures in Participatory Research, with Lori Ross December 13, 2021 Conference links: Conference overview Videos of Jamila Michener’s keynote and panel presentations by Alpha Abebe and Rhonda C. George, Joanna Massie, Genevieve Fuji Johnson Guest and supporter links: Katherine (Katie) Boothe on twitter Alana Cattapan on twitter Public Engagement in Health Policy project

On September 22, 2022, the Public Engagement in Health Policy project team at McMaster University hosted a one-day conference, Reimagining public engagement in a changing world. Community members, engagement practitioners, researchers, and policymakers gathered virtually and in person to discuss the opportunities and pitfalls of public engagement and to envision a way forward. Attendees explored questions such as, what does it mean to engage with communities ethically? How can researchers use new approaches to engagement to tackle contemporary health policy issues with communities? And what are the roots of mistrust between communities and researchers/policymakers?  The day opened with Dr. Jamila Michener, Associate Professor of Government and Public Policy at Cornell University. In her keynote presentation, she shared enriching insights on public engagement at the intersections of power, poverty, public policy and racism. Transformative and impactful public engagement continues to be hindered by a range of problems from insufficient resources to structural disincentives. Research must not only seek to avoid tokenism, to meaningfully create space for people to participate; it must also be reflexive. Researchers have a critical role in radically transforming engagement by understanding how their positionality affects their work. They should begin their work by asking: who am I, what are my values, what is my position and role? This reflexivity is essential as it shapes the very research questions we ask and our rationale for engaging with communities. It is from this intersectional lens that Dr. Michener proposed the values of equity, dignity, and democracy as anchors for ethical public engagement.  - Excerpt from a blog post written by Joanna Massie, Roma Dhamanaskar, and Rana Saleh  ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] ----------------- Links: Dr. Jamila Michener on twitter Video of Dr. Michener’s keynote Public Engagement in Health Policy project  

What makes an engagement process legitimate?  How do technical experts feel about engagement, and how have their ideas of legitimacy changed over time?  These are just some of the questions we explore with our guest, Katherine (Katie) Boothe, Associate Professor in the Political Science Department at McMaster University. A recent paper of Katie's (Redefining Legitimacy in Canadian Drug Assessment Policy? Comparing Ideas Over Time) seeks to understand how and when people's ideas of legitimacy change when lay members are added to otherwise 'expert only' committees. In this case, the context is Canadian drug assessment advisory committees, where a group of technical experts and lay members help to determine what pharmaceutical drugs should be covered by public drug insurance policies.  Join us for this fascinating conversation exploring how public and patient engagement challenges pre-existing standards of what constitutes "good" scientific evidence, and how (unarticulated) differing rationales and goals for engagement can lead to frustration and disappointment.  ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] ----------------- Guest links: Katherine Boothe on twitter Katherine Boothe's profile Mentioned in this episode: (Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time Public Engagement in Health Policy project  

Kim McGrail is the Scientific Director of Health Data Research Network, a CIHR funded initiative whose work in the health data space has implications for, well, everyone living in Canada. And they're keen to involve the public not just in getting input, but in providing guidance into key decisions.  HDRN's work is both technical and somewhat conceptual: their aim is to support researchers to better access health data for research from multiple sources and regions, while respecting local, regional and Indigenous rights, cultural practices and laws. Public engagement in this context may seem straightforward, but it's hardly so. In this episode, we talk through some of HDRN's challenges and opportunities related to understanding public concerns related to the collection, use and sharing of health data.  Although we touch on some of the operational and technical details of HDRN's work, our primary focus is on the use of deliberation as an engagement approach.  And how it's difficult to talk about engagement at a pan-Canadian level without also considering democratic ideals and how we might navigate living together as a diverse society. ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript]   Guest links: Kim McGrail on twitter Kim McGrail's profile Mentioned in this episode: Health Data Research Network HDRN Public Advisory Council Paris Citizens' Assembly

In previous episodes we've talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven't really got into some of the operational nuts and bolts, like the fact that there's a whole fee-for-service industry out there - agencies hired by healthcare organizations to support engagement strategy and activities. Join us for this behind-the-scenes look at what engagement-for-hire looks like. What is the work that's involved? And how does a strategic consulting firm advise on or think about engagement?  Is any of this actually useful or meaningful, or does it only fulfill some kind of strategic or tactical purpose?  We attempt to get to the bottom of these questions with John Perenack, of StrategyCorp.  John is a communications specialist who often supports clients in developing public and stakeholder engagement strategies and activities.  We're excited to bring you this fascinating and illuminating conversation! ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: John Perenack on twitter John Perenack on Linkedin "Reputation Town" podcast Mentioned in this episode: News coverage of the Windsor hospital location conflict https://windsor.ctvnews.ca/hearing-ends-into-location-for-windsor-essex-mega-hospital-1.4633927 https://windsorstar.com/news/local-news/campp-loses-latest-bid-to-scuttle-hospitals-chosen-county-rd-42-location https://www.cbc.ca/news/canada/windsor/windsor-mega-hospital-ontario-1.6200294 Previous episodes mentioning "hard to reach"  Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George Dilemmas of Representation, with Paula Rowland Webinar Extra: Paula Rowland presents Dilemmas of Representation for BPER

In this episode, we continue our conversation with Alpha Abebe and Rhonda C. George!  (Haven't heard the first conversation yet? Listen here!) This time, we talk about Black communities' response to COVID, and public health response to Black communities. ----------------- During a public health crisis is the exact wrong time to try and build relationships and trust with communities who have not historically been included in health policy decision making, and whose health and health care needs continued to be neglected. But this, of course, doesn't mean that Black communities didn't recognize both the real danger posed by COVID, or their own tenuous connection to mainstream health services. Alpha and Rhonda share how leaders of Black-led organizations rallied to address community needs during COVID, and discuss the importance of supporting Black communities to build capacity and resilience for the future.  ----------------- Alpha Abebe is an Assistant Professor in the Faculty of Humanities at McMaster University, and Rhonda C. George is a PhD candidate in Sociology at York University. They're both researchers with the Public Engagement in Health Policy Project. This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Alpha Abebe Profile on twitter Rhonda C. George Publications on twitter Related links: Unpacking the ‘Public’ in Public Engagement: In Search of Black Communities Failure to include Black communities in health policy public engagement perpetuates health disparities Mentioned in this episode: Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George   Tuskegee https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://eji.org/news/history-racial-injustice-tuskegee-syphilis-experiment/ OCAP® https://fnigc.ca/ https://fnigc.ca/ocap-training/ Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud Public Engagement in Health Policy Project  The Future of Canada Project  

In this episode, we continue our Health Policy series with guests Alpha Abebe and Rhonda C. George. Alpha and Rhonda's research foregrounds Black community experiences and insights related to health policy engagement. We're featuring their work over two back-to-back episodes. This episode focuses on the engagement work of Black communities. Our guests want to "flip the script," shifting away from a deficit model of understanding Black community engagement. The follow up episode features Alpha and Rhonda's research on Black community engagement during COVID, and includes discussion on why they think it's valuable for Black researchers to be doing this kind of work. Alpha and Rhonda are members of the Public Engagement in Health Policy team based at McMaster University, which aims to strengthen health policymaking in Canada by providing a platform for interdisciplinary scholarship, education and leadership in public engagement.  This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Alpha Abebe Profile on twitter Rhonda C. George Publications on twitter Related links: Unpacking the ‘Public’ in Public Engagement: In Search of Black Communities Failure to include Black communities in health policy public engagement perpetuates health disparities Mentioned in this episode: Interview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of Canada  Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud Public Engagement in Health Policy Project  The Future of Canada Project

We're back! We're excited to get rolling on this new series on Health Policy!  We have a range of questions we want to explore, including: who is involved in making policy, and how are public needs identified? How is public engagement defined? And who is included or excluded? We're kicking off the series with a conversation with Julia Abelson. Julia is a professor at McMaster University in the Department of Health Evidence and Impact and an associate member in the Department of Political Science.  She has a special research interest in public engagement in health system governance, and the analysis of the determinants of health policy decision making. Julia's been on the podcast before (Evaluating Patient Engagement) and this time around, she's back to talk about the Public Engagement in Health Policy project, based at McMaster. We reconnected with Julia to chat about some of the early insights learned in the project so far. One of the research themes in the project is Looking Back, reflecting on the evolution of engagement practices and health policy and seeing what can be learned from past experiences. In this episode, Julia shares her insights related to trends in engagement in health policy, and also discusses one of the project's first outputs - a case survey of government-initiated public engagement in health policy. This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Julia Abelson on twitter Julia Abelson at McMaster PPE Collaborative Previous episode with Julia Mentioned in this episode: Public Engagement in Health Policy Project  Trends in Public Engagement in Canadian Health Policy from 2000-2021: Results from a Comparative Descriptive Analysis The Future of Canada Project 

For this final episode of Season 3, we want to acknowledge the Ontario SPOR SUPPORT Unit for supporting us to get this project off the ground and establish a solid foundation for critical dialogue about patient engagement and partnership. So we're turning things over to members of OSSU's Patient Partner Working Group: Annette McKinnon, Bilqis Williams, and honourary member, Stuart Nicholls. We invited them to share their thoughts on patient partnership today, and where they think it's heading. Stay tuned, more to come!! [download transcript] Guests: Annette McKinnon (linkedin, twitter) Bilqis Williams (linkedin, twitter, instagram) Stuart G. Nicholls (Ottawa Methods Centre, twitter) Mentioned in this episode: Ontario SPOR SUPPORT Unit Ottawa Methods Centre IC/ES Strategy for Patient-Oriented Research OMERACT Patient Advisors Network Additional music and production support provided by Angus Turney

Our guest Mark Weir is a seasoned engagement professional working in healthcare. Typically, engagement-related communities of practice tend to focus on things like best practices and 'how to' - not so much on the emotional toll it can take to fully engage in the work. In a recent IAP2 Canada workshop, Mark explored the effects of "moral distress", which he defines as feeling stuck and wanting to do the right thing but constrained due to systemic or institutional barriers - which are beyond the engagement professional's control. We spoke to Mark about the experience of carrying these kinds of burdens, which can go unseen or unacknowledged. Not only did we get to delve deeper into the experience of engagement work - this was also an opportunity to take a closer look at the context of engagement in general. What are some possible causes of this distress? And what does it say about the overall project of patient engagement?  In this episode, we hear from Mark about the challenges faced by engagement professionals (in healthcare) due to moral distress, and then later in the episode, we try to sort through some of the bigger, confounding questions that seem to follow us from episode to episode! [download transcript] Guest: Mark Weir, Director of Strategic Planning and Community Engagement, Woodstock Hospital (Ontario) Mark on twitter Mark's profile on LinkedIn Mentioned in this episode: Our previous episodes featuring engagement professionals: Expertise Part 2, with Francine Buchanan Evaluating Holland Bloorview’s Family Leadership Program, with Aman Sium  Lived Experience, with Katherine Dib and Katie Birnie of SKIP Walking a Tightrope: Inside the Engagement Professional Role, with Kelli Dilworth IAP2 Canada website First definition of moral distress in nursing - Jameton, A., Nursing Practice: The ethical issues. Prentice Hall Series in the Philosophy of Medicine, ed. G. S1984, Englewood Cliffs, NJ: Prentice Hall. Mark Weir's IAP2 Canada workshop slides - Weighing on Our Shoulders: Moral Distress and Compassion Fatigue in Engagement Professionals Additional music and production support provided by Angus Turney

Most of our episodes have been about engagement in institutional healthcare spaces - places like hospitals or research institutes. But of course, there are a multitude of other places where patient or service user engagement takes place.  Our guests are Jenn Broad and Paula Tookey. They work out of the South Riverdale Community Health Center in East Toronto. Jenn is the Program Manager of Harm Reduction and Hep C. And Paula is the Manager of Keep Six, a consumption and treatment service, which is a health service described as a place where people inject, snort, or orally consume pre-obtained drugs in a safe, hygienic and welcoming environment under the supervision of trained staff.  As you listen, we encourage you to tune in to their insights specific to engagement within a community that experiences persistent stigma and systemic discrimination. What we learned from talking to Jenn and Paula is that engagement in certain health related community services, like harm reduction programs, has different and possibly higher stakes for the people involved than what we typically think of as "patient engagement" in mainstream or organizational health services. [download transcript] Guests: Jenn Broad, Program Manager of Harm Reduction and Hep-C, South Riverdale Community Health Centre Paula Tookey, Manager of Keep Six Consumption and Treatment Service, South Riverdale Community Health Centre Mentioned in this episode: South Riverdale Community Health Centre From client to co-worker: a case study of the transition to peer work within a multi-disciplinary hepatitis c treatment team in Toronto, Canada

We initially invited Lori Ross on the podcast to discuss the PEERS  (Peers Examining Experiences in Research) Study - a 2 yr federally funded research project looking at the experiences of peer researchers with lived experience in communities that face structural oppression in Canada, including mental health service users, people who use drugs, trans and non-binary communities, and racialized communities.  Not only was the project team studying peer researchers, but they employed peer researchers (as research assistants) as well.  In our conversation, we discussed this research project, the findings of which are still to be written up. However, the conversation also revealed that the research team was concurrently studying what they saw as failures in the study while they were conducting the research, and that they plan to write up those reflections as well. We're excited to bring you this conversation with Lori Ross, the principal investigator, who shares with us some of the ins and outs of studying a process while simultaneously doing the work... and some of the project team's insights into why their participatory research project experienced failures.  Added to the experiential piece is their theoretical framing, which is sure to shed light on why participatory research conducted in the context of a large institution may indeed be "doomed to fail" when it comes to power sharing and other social justice aims. [download transcript] Guests: Lori Ross on twitter Lori Ross' profile (Dalla Lana School of Public Health at the University of Toronto) Mentioned in this episode: PEERS study web page

Hi there – Jennifer here! We know everyone’s busy this time of year, so just a quick announcement!  We’re looking for some short contributions for an upcoming episode.  The one we’re working on examines some of the challenges of conducting participatory research in an academic or institutional setting.   So… if you’ve been involved in a participatory research project as a patient partner, we’d love to hear from you! We’re interested in your perspective. How was the experience for you? And how was it different or similar to other research projects? We’re also interested in whether there were any institutional or bureaucratic policies or processes that impeded the project in some way. If you’re interested in being included in an upcoming episode, there are a few ways to contribute. Maybe the easiest way is to call in to our new listener phone line - the number is 647-812-2909.  Just have a listen to the instructions. You can re-record as needed, and just call back if you need a do-over.  You can also send us a written email, or record a voice memo and email it to us. The address is mattersofengagement@gmail.com.  All of these details are also on our website – just click the Contact page at mattersofengagement.com And hey, even if you don’t want to contribute to this episode, we always love feedback!  Please send us your comments on any episode, or suggest a topic. Thanks for listening, and we’d love to hear from you.  

Our guest, Biba Tinga, is President and Executive Director of the Sickle Cell Disease Association of Canada. We initially spoke with Biba to ask for her reflections on the Equity and Diversity episode with Nav Persaud. But once we started talking, we realized that Biba's experience as an advocate was almost a perfect case study of what we've been talking about - the importance of focusing on health equity, as opposed to comparatively simple notions of diversity. So even though this episode is an extension of the Patient Partner Reflections segment in the previous episode, it also gets into some of the realities of advocating for policy change to support the health needs of a racialized group - one that is disproportionately affected by a rare disease, and is not well supported by our Canadian health care system. Sickle cell disease is an inherited blood disorder. And according to Health Canada, it can shorten the life of affected individuals by more than 30 years. It's caused by abnormally shaped red blood cells that can impair blood flow, causing strokes, lung disease and organ damage. In Canada, around 5000 people live with sickle cell disease, and it most commonly affects people of African descent, as well as Caribbean, Latin or South American, Middle Eastern and South Asian descent. [download transcript] Guests: Biba Tinga on twitter Sickle Cell Disease Association of Canada on Facebook Sickle Cell Disease Association of Canada on twitter Mentioned in this episode: Interview with Biba Tinga

There's increasing pressure on government and healthcare institutions to address barriers to health equity, which disproportionately impact people who experienced systemic racism, and other disadvantage or mistreatment. And these barriers have always existed. But awareness has been heightened lately in the public consciousness by news coverage of recent world events. And we're now hyper-aware of race related health disparities and inequities, unequal access to health care for people who experience systemic disadvantage, and the lack of support for the health of indigenous peoples. Governments and healthcare organizations are under intense scrutiny for how they handle equity, health equity and diversity. And the stakes are really high. So what does this have to do with patient engagement and partnership? Well, we think a lot. The goals of these programs include improving health equity and equitable access to health care for everyone. And the belief is that diversity among engaged patients - diversity representative of the people in Canada - is critical to helping achieve these goals. One of the problems is that engaged patients are mostly middle class, white, and female. There are exceptions of course, but there is a long way to go. So to help achieve desired levels of diversity, there's a lot of focus on recruitment, outreach and accessibility, all in an effort to attract people from underrepresented groups. We've been keen to talk through some of these ideas and assumptions as we think there are some interesting tensions to unpack. So we contacted our guest, Dr. Nav Persaud, for perspective and insight. We hope you find our discussion as illuminating as we did! This episode also includes a recorded submission from Vina Mohabir in our new segment, "Patient Partner Reflections", brought to you by OSSU.  [download transcript] Guests: Nav Persaud's profile Nav Persaud on twitter Vina Mohabir on twitter Mentioned in this episode: "Fairness is Excellence", OSSU's Equity Framework

In this first episode of Season 3, we go back to basics. What does "patient-oriented" (as in patient-oriented research) actually mean?  To answer this and other questions, we're joined by Vasanthi Srinivasan, Executive Director of the Ontario SPOR SUPPORT Unit, and Maureen Smith, Chair of OSSU's Patient Partner Working Group and member of OSSU's Board of Directors. (OSSU is a generous financial supporter of this podcast.) Vasanthi outlines the hopes and dreams of the patient-partnership movement, sharing the vision for a culture change and acknowledging that there's still a way to go.  Maureen shares her perspective as a long-time patient partner, providing a frank account of the possibilities - and challenges - of partnering in research.   Join us for these two illuminating conversations in which we discuss the aspirations, implications and challenges in moving towards a "patient-partnered" future.   [download transcript] Guests: Vasanthi Srinivasan Maureen Smith Links to organizations mentioned in this episode: Ontario SPOR SUPPORT Unit Canadian Institutes of Health Research Strategy for Patient-Oriented Research US National Institutes of Health References provided by Maureen Smith: Patient Centricity in Patient Preference Studies: The Patient Perspective Patient and family engagement in the development of core outcome sets for two rare chronic diseases in children

The Ontario Center of Excellence for Child and Youth Mental Health is an organization that supports the child and youth mental health sector through a number of initiatives and services. Their approach to developing and delivering that support is done in active collaboration with young people and their families. In healthcare spaces, we often see engagement practice as something separate, maybe adjacent, to everyday operations. But here, youth and family involvement is deeply embedded. Kelli Dilworth is a Knowledge Broker at the Center. She's responsible for supporting agencies and their engagement efforts, and implementing quality standards for youth and family engagement. For this episode, we've put aside the ins and outs of Kelli's job per se, and instead wanted to share her reflections and insights about her role - the rewards and frustrations that come with both her official responsibilities and the personal obligations and commitments she feels to the young people that she works with. It really is a tightrope - and Kelli's honesty and openness help us get a better understanding. [download transcript] Mentioned in this episode: Ontario Center of Excellence for Child and Youth Mental Health Ontario Center of Excellence for Child and Youth Mental Health on Twitter  Also, join Matters of Engagement, SPORcast and PEP Talks for a live collaboration event on February 2 for a session titled "Podcasting and Patient Engagment"! Details and registration here.