There’s a lot of enthusiasm for patient engagement and partnership right now, but not a lot of opportunities for more nuanced or critical dialogue about what may *really* be happening, or not happening at all. The podcasting format is an ideal vehicle to host conversations and reflections that we think may shed more light on why some issues continue to be difficult or confounding.Jennifer and Emily host each episode, providing a blend of interviews (with patient partners, researchers, academics and engagement professionals), scripted narration, and presentation of existing research papers and opinion pieces. The goals for each episode are slightly different – perhaps to further a conversation already being had, or to give name to experiences that are hard to describe, or to draw on research and theory to attempt to explain why things are the way they are.
Lived Experience, with Katherine Dib and Katie Birnie of SKIP
What 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 are Katherine Dib and Katie Birnie of SKIP - Solutions for Kids in Pain. SKIP is a knowledge mobilization network which helps to translate and disseminate research and information about pediatric pain, to a variety of potential knowledge users including families, physicians, researchers, and policy-makers. Katherine is SKIP's Patient Engagement Coordinator, a role reserved for someone with lived experience of pediatric pain, and Katie is SKIP's Assistant Scientific Director. *Correction: In this episode we misidentify SKIP's funder as CIHR. SKIP is funded by the Networks of Centres of Excellence.[download transcript]Mentioned in this episode:SKIP - Solutions for Kids in PainSKIP on TwitterKatie Birnie on Twitter
Policy development in a pandemic - is there a role for patient partners? With Julie Drury and Christa Haanstra
Early 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 of family caregivers wouldn't have happened in the way it did.Our guests, Julie Drury and Christa Haanstra, share with us their impressions and insights as to where things might have gone wrong, and how things could go better as COVID-19 continues to impact visitation for family members and caregivers.[download transcript]Mentioned in this episode:Patient Partnership and COVID-19 Research - OSSU Patient Partners Working Group Webinar, July 9th 2020Stronger Together: Adapting Patient-Oriented Research During COVID-19 Podcast (and Webinar) SeriesHuron Perth Healthcare AllianceBC Patient Safety & Quality CouncilHôtel-Dieu Grace HealthcareThe Change FoundationThe Ontario Caregiver OrganizationJulie Drury on TwitterChrista Haanstra on Twitter
Reflections on Engagement, with Lorraine, Maureen, Keith and Jess
In 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 Emily as they parse through their guests' reflections and try to figure out what's next.[download transcript]
Evaluating Holland Bloorview's Family Leadership Program, with Aman Sium
How 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. [download transcript]Aman Sium on TwitterRelated links:Holland Bloorview's Family Leadership Program
Evaluating Patient Engagement, A Conversation with Julia Abelson
How 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 partners do the best they can. [download transcript] Julia Abelson on Twitter Related links:McMaster University Public & Patient Engagement CollaborativeMcMaster University Public & Patient Engagement Collaborative - ProductsRelated publications:Abelson J, Tripp L, Kandasamy S, Burrows K, on behalf of the PPEET Implementation Study Team. (2019). Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study. Health Expectations, 22(5): 1132-1143. Abelson J, Humphrey A, Syrowatka A, Bidonde J, Judd M. (2018). Evaluating patient, family and public engagement in health services improvement and system design. Healthcare Quarterly, 21:61-67.
Compensation, with Zal Press and Dawn P. Richards
How 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 workforce; the historical roots of healthcare as a faith-based charitable enterprise; how patient partners are shouldering the burden for having awkward conversations about compensation; that compensation doesn't fix communication issues... and so much more![download transcript]Mentioned in this episode:Patient partner compensation in research and health care: the patient perspective on why and how, Richards et alMedieval Healthcare and the Rise of Charitable Institutions: The History of the Municipal Hospital, by Tiffany A. ZieglerRethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness, May et alUnderstanding the motivations of patients: A co‐designed project to understand the factors behind patient engagement, McCarron et alZal Press (Patient Commando) on TwitterDawn P. Richards on Twitter