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Matters of EngagementCaregiving and WorkWe're doing something a little bit different! We're taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app.
This episode has two parts. We're first going to feature a short talk Jennifer gave at the Canadian Caregiving Summit in Ottawa a few weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living.
After that short recording - which is about 10 minutes - tune in to Jennifer and...2024-01-0355 minMatters of Engagement”How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research projectWhat 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 w...2023-07-131h 08Matters of EngagementSpring Update 2023: Checking in with Jen and EmIt'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.
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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
...2023-06-1308 minMatters of EngagementBeyond Mandates: The Essential Input of Residents in Long-term Care Policy (Health Policy Series)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 h...2023-02-1648 minMatters of EngagementCritical Reflections on Public Engagement (Health Policy Series)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 eng...2022-12-1547 minMatters of EngagementTransformative Public Engagement: Pitfalls, Possibilities and Promise - keynote by Dr. Jamila Michener (Health Policy Series)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 D...2022-11-2946 minMatters of EngagementUnderstanding Legitimacy in Public and Patient Engagement, with Katherine Boothe (Health Policy Series)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...2022-11-1739 minMatters of EngagementDeliberation, Democracy and Public Engagement: A Conversation with Kim McGrail (Health Policy SeriesKim 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 s...2022-09-1545 minMatters of EngagementThe Business and Politics of Engagement, with John Perenack of StrategyCorp (Health Policy Series)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 o...2022-07-2649 minMatters of EngagementBlack Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George (Health Policy Series)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.
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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 d...2022-06-1636 minMatters of Engagement”Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George (Health Policy Series)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...2022-06-0739 minMatters of EngagementHealth Policy Series Kick-off!: A retrospective look at public engagement, with Julia AbelsonWe'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, an...2022-05-1927 minMatters of EngagementOnwards and upwards: Jen and Emily check inJust a quick check in to say hello and share what's next!
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2022-04-1303 minMatters of EngagementSeason 3 Finale: Patient Partner Reflections, brought to you by OSSUFor 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!!
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Guests:
Annette McKinnon (linkedin, twitter)
Bilqis Williams (linkedin, t...2022-03-2945 minMatters of EngagementMoral Distress in Engagement Professionals, with Mark WeirOur 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...2022-02-0342 minMatters of EngagementEngagement in Context: Reflections from Jenn Broad and Paula Tookey of the South Riverdale Community Health CentreMost 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 c...2021-12-2027 minMatters of EngagementDiscussing Failures in Participatory Research, with Lori RossWe 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...2021-12-1341 minMatters of EngagementWe‘re looking for patient partner stories and experiences!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...2021-11-2901 minMatters of EngagementInterview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of CanadaOur 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...2021-11-2534 minMatters of EngagementEquity, Diversity, and Patient Engagement - with Dr. Nav PersaudThere'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...2021-11-1658 minMatters of EngagementWebinar Extra: Paula Rowland presents Dilemmas of Representation for BPEROn October 12 2021, Emily and Jennifer moderated an online presentation featuring Paula Rowland. Paula was a guest way back in Season One, discussing a paper she co-authored with Arno Kumagai, called Dilemmas of Representation. We wanted to post the session here because it revisits and also builds on the themes in the original paper.
This presentation was part of a series called Best Practice in Education Rounds, co-sponsored through the Center for Faculty Development, The Wilson Centre, and the Centre for Interprofessional Education at the University of Toronto.
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Webinar:
Youtube video o...2021-11-0235 minMatters of EngagementPatient-Oriented to Patient-Partnered: Aspirations, Implications, ChallengesIn 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 lo...2021-10-1947 minMatters of EngagementWebinar Extra: Podcasts and Patient Engagement - with SPORcast, PEP Talks and Matters of EngagementWe're busy preparing for our next season. But in the meantime, we have a fun episode to share with you! It's the recording of the webinar we did in collaboration with our friends at PEP Talks and SPORcast, in January 2021. It was a live session called "Podcasts and Patient Engagement" and features Paul Fairie and Sandra Zelinsky of PEP Talks, Bev Pomeroy of SPORcast, and Jennifer Johannesen and Emily Nicholas Angl, hosts of Matters of Engagement. We each talk about our respective podcast projects, why and how we got started, ideas about sustainability, how we approach our topics and...2021-03-041h 18Matters of EngagementWalking a Tightrope: Inside the Engagement Professional Role, with Kelli DilworthThe 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...2021-01-2525 minMatters of EngagementResearch Ethics Boards and Patient PartnershipBack 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...2021-01-1233 minMatters of EngagementEngaging in Storytelling, Part 3: "Creating Spaces for Storytellers" - produced by PEP TalksWe have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling – together they provide a rich picture of some of the challenges, concerns, and also opportunities when it comes to engaging in storytelling. We will be sharing all three episodes on our platforms.
This is the last of 3, and it’s produced by PEP Talks! Creating Spaces for Storytellers
Guest: Amy Hill, Silence Speaks Director, Story Center US
"I...2020-12-1737 minMatters of EngagementEngaging in Storytelling, Part 2: "Organizations and Patient Stories" - produced by Matters of EngagementWe have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling – together they provide a rich picture of some of the challenges, concerns, and also opportunities when it comes to engaging in storytelling. We will be sharing all three episodes on our platforms.
This is the 2nd of 3, and it’s produced by us! Organizations and Patient Stories
Our guests are Carol Fancott (Director of Patient Partnerships and Engagemen...2020-12-1654 minMatters of EngagementEngaging in Storytelling, Part 1: "The Patient Story Experience - Cost or Benefit?" by SPORcast"We have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling - together they provide a rich picture of some of the challenges, concerns, and also opportunities when it comes to engaging in storytelling. We will be sharing all three episodes on our platforms.
This is the first of 3, and it’s produced by our friends at SPORCast: The Patient Story Experience: Cost or Benefit?
In this episode, Bev ho...2020-12-1542 minMatters of EngagementVagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton NinomiyaThis is a conversation we've been sitting with for many weeks, thinking hard about how to present it. We spoke to our guests with the idea we would simply talk about the paper they co-authored... and we did... but we also ventured into spaces we didn't anticipate! Although they are not from the patient engagement world, Amy and Melody's research and insights cast a different sort of light on engagement activities. Hosts Jennifer and Emily think through ideas of power, obfuscation, accountability, and whether we're all just spinning our wheels...by design.
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Mentioned i...2020-11-2336 minMatters of EngagementPatient Experience as Evidence, with Miles SibleyThe Patient Experience Library is a UK-based online archive of research and reports focused on patient experience. They just published a report titled "Inadmissible Evidence" which outlines, in direct and accessible terms, why they think patient experience evidence is not valued alongside medical evidence. Their answer? It's healthcare's culture of minimizing patient accounts, complaints, and reports... essentially, a discounting of patient voice that is pervasive throughout healthcare and which they link directly to avoidable harm to patients. They point to a double standard which takes medical research seriously, while dismissing the experiences of patients as "anecdotal".
Jennifer a...2020-11-0936 min
Matters of EngagementHosts Jennifer and Emily learn to "let go of perfection"It'll be another week or so until we release our next scheduled episode. So we thought this would be a perfect opportunity to give listeners a bit of insight into how we approach making this podcast! This is our unscripted (but lightly edited) conversation about everything from interviewing guests to how we think about scripting and editing to why we love working together on this podcast.
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2020-11-0223 minMatters of EngagementLived Experience, with Katherine Dib and Katie Birnie of SKIPWhat exactly do we mean when we say 'lived experience'? What does it convey that other terms don't? What sort of extra 'work' is the term doing, and for whose benefit? Lots to consider!
We take listeners through two segments in this episode. First, we speak with an organization that is committed to patient engagement and partnership, and also hiring people with lived experience into certain roles. Then, taking a wider view on engagement generally, we contemplate the ins and outs of the term 'lived experience' and consider its value to healthcare organizations.
Our guests ar...2020-10-1949 minMatters of EngagementPolicy development in a pandemic - is there a role for patient partners? With Julie Drury and Christa HaanstraEarly on in the pandemic, Ontario's long term care (and other healthcare) facilities) shut out all visitors and family members from visiting their loved ones. This included essential (unpaid) family caregivers, who are typically an important part of a resident's care team. The hardship has been, and continues to be, unbearable for many. In addition, many patient engagement and partnership activities were suspended, or dropped entirely. It's a widely held view that if patients and caregivers had been involved in policy-making early on, the focus on 'patient and family centered care' wouldn't have gotten lost, and the tragic exclusion...2020-10-0548 minMatters of EngagementReflections on Engagement, with Lorraine, Maureen, Keith and JessIn this final episode of the season, we invite special guests Lorraine, Maureen and Keith (patient partners) as well as Jess (researcher/MD from the UK), to reflect on their experiences of participating in and researching engagement, and to comment on previous episodes which might have found some resonance with them.
Don't miss this one! It's a rare opportunity to hear patient partners' heartfelt expressions of gratitude, frustration, and everything in between - and to hear from a researcher/MD what she's learning as she wraps up her PhD on PPI.
Join hosts Jennifer and E...2020-08-3130 minMatters of EngagementEvaluating Holland Bloorview's Family Leadership Program, with Aman SiumHow does an organization like Holland Bloorview Kids Rehabilitation Hospital evaluate its extensive client and family engagement programs? Join us for this wide-ranging and engaging conversation with Aman Sium, Director of Client and Family Integrated Care. Get an in-depth look at how this world renowned facility involves clients and families in everything from research to clinical service delivery to bedside chair design.
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Aman Sium on Twitter
Related links:
Holland Bloorview's Family Leadership Program
2020-08-1738 minMatters of EngagementEvaluating Patient Engagement, A Conversation with Julia AbelsonHow can we evaluate patient engagement when often the goals for engagement are not clearly defined or articulated? How do we come to agreement on what good engagement looks like? Join us for this illuminating conversation with researcher Julia Abelson on challenges and opportunities for improvement in this relatively new field of Evaluation of Patient Engagement.
Julia reflects on her own experiences as a researcher of patient engagement who also partners with patients... it's a minefield of quandaries but Julia navigates the work with reflexivity, empathy, and a commitment to helping both researchers and patient pa...2020-08-0335 minMatters of EngagementCompensation, with Zal Press and Dawn P. RichardsHow to compensate patient partners, and under what circumstances, has long been a topic of debate among patient partners, researchers, and engagement professionals. Join us as we speak with Zal Press and Dawn P. Richards, co-authors (with Isabel Jordan and Kimberly Strain) of "Patient partner compensation in research and health care: the patient perspective on why and how." They share their experiences and perspectives as long-time patient partners on both organizational committees and health research projects.
In this fascinating exploration with Zal and Dawn, we talk through some big ideas: patients conceptualized as part of the healthcare...2020-07-2045 minMatters of EngagementDemocratic patient-led councils, the rise of patient engagement, and the erosion of advocacy - with Lucy CostaPatient engagement is often loosely described as adhering to democratic principles even though, as we discussed in Dilemmas of Representation, there is rarely an election apparatus to support it. We thought it would be interesting to learn more about patient-led organizations that democratically elect who speaks and acts on their community’s behalf.
The Empowerment Council is a mental health service user advocacy organization funded by the Centre for Addiction and Mental Health in Toronto. In this episode, we speak with Lucy Costa, Deputy Executive Director, to learn more about patient councils, to understand how democratic patient-led orga...2020-07-0630 minMatters of EngagementDilemmas of Representation, with Paula RowlandCalls for more diversity and better representation among engaged patients or patient partners seem to prompt changes to recruitment tactics and making engagement more accessible. What if there’s more to it than that? We talk to Paula Rowland about the paper she co-authored (with Arno Kumagai) called “Dilemmas of Representation“, which applies the concept of “recruitmentology” to engagement practice, explores types of representation, and explains why we may encounter trouble when there’s a mismatch of expectations.
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Mentioned in this episode:
Dilemmas of representation: Patient engagement in health professions education
more about recrui...2020-06-2922 minMatters of EngagementExpertise Part 2, with Francine BuchananPatient partners should be supported to elevate their skills and knowledge so they can contribute to healthcare improvement and system change, as experts in their own right. This is how Francine Buchanan sees the future of patient partnership. We speak with Francine about her views, and about the article she wrote on healthydebate.ca in response to Frank's.
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Mentioned in this episode:
How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan
The risks of equating ‘lived experience’ with patient expertise by Frank Gavin
In Part 1, Fra...2020-06-1626 minMatters of EngagementExpertise Part 1, with Frank GavinAre patients ‘experts’? Does lived experience automatically mean one has expertise? What are we really saying, or accomplishing, when we call patients experts? We think about these questions and talk to Frank Gavin about his article on healthydebate.ca. Frank isn’t sold on the ‘expert’ label as it applies to patient experience, and he explains why in our conversation.
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Mentioned in this episode:
The risks of equating ‘lived experience’ with patient expertise by Frank Gavin
How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan
...2020-06-1625 minMatters of EngagementMeet the hosts!Welcome to Matters of Engagement - a podcast exploring the complex world of patient engagement and partnership. Full episodes will be released starting July 1 June 16 2020. In this short trailer, meet your hosts Jennifer and Emily.
2020-06-1006 min