how we work together THE INTEGRATED KNOWLEDGE TRANSLATION RESEARCH NETWORK CASEBOOK NO. 2 | 2020 EDITED BY ANITA KOTHARI, CHRIS MCCUTCHEON, LAURA BOLAND & IAN D GRAHAM The Integrated Knowledge Translation Research Network (IKTRN) is a network of knowledge users and researchers committed to studying, teaching and practicing integrated knowledge translation. The network is supported by the Canadian Institutes of Health Research through a seven- year Foundation Grant (FDN 14237) and is based at the Centre for Practice- Changing Research at The Ottawa Hospital, which is affiliated with the University of Ottawa. For more information, please visit: https://iktrn.ohri.ca Please cite as: Kothari A, McCutcheon C, Boland L, Graham ID, editors. How We Work Together: The Integrated Knowledge Translation Research Network Casebook. Volume 2. Ottawa: Integrated Knowledge Translation Research Network. 2020. CONTENTS 01 Foreword Anita Kothari The experience of using an integrated knowledge translation approach to develop, implement and evaluate an audit and 02 feedback system in Ontario maternal-newborn hospitals Sandra Dunn, Jessica Reszel, Deborah Weiss, Ian D Graham, Ann E Sprague, Mark Walker, on behalf of the Maternal Newborn Dashboard team Development of a patient decision aid to accept or decline implantable cardioverter-defibrillator replacement: An example 07 of integrated knowledge translation in PhD research Krystina B Lewis, Dawn Stacey, Sandra L Carroll, David Birnie, for the ICD replacement patient decision aid study team Developing and implementing culturally safe cancer 10 survivorship strategies with First Nations peoples Wendy Gifford, Della Adams, Eddie Gray, Amber Montour, Vivianne Grandpierre, Roanne Thomas Dialogue as a catalyst for equity-centred research: The Canadian Coalition for Global Health Research’s Gathering 14 Perspectives studies Katrina M Plamondon, Lydia Kapiriri, on behalf of the Canadian Coalition for Global Health Research’s Gathering Perspectives studies research teams Ready to go: Using an integrated knowledge translation approach to support the development of a funding application to explore patient engagement in Canadian circulatory and 19 respiratory diseases research Davina J Banner, Ian D Graham, Marc Bains, Sandra Carroll, Shawn Aaron, Jeffery Healey, Duncan Stewart, Anthony Tang, Mary Runte, Colleen McGavin, Damanpreet K Kandola The Attachment and Child Health (ATTACH) integrated 23 knowledge translation project Nicole Letourneau, Carlene Donnelly, Michelle Gagnon, Martha Hart, Lubna Anis Using an integrated knowledge translation approach to better understand the impacts of adverse childhood experiences 26 among adult primary care patients: The EmbrACE Study Julia C Poole, Dennis Pusch, Keith S Dobson, Nicole Sherren, Michelle Gagnon, June Bergman FOREWORD Anita Kothari The Integrated Knowledge Translation Research Network (IKTRN) is pleased to present the second volume of our integrated knowledge translation (IKT) casebook series. These seven cases demonstrate how researchers are partnering with knowledge users before, during and after a research project. In other words, how IKT happens in real life. The cases help build our knowledge about IKT by challenging and then evolving existing theory-based literature. In various ways, most projects described in this volume included patients or laypersons as research partners. Some cases described patients as being part of local implementation teams (Gifford, Lewis, Poole), while Banner et al. described how patients played a critical role in developing a funding application. Sometimes patients or laypersons were the only research partners. In other cases, researchers worked with patients, laypersons, clinicians, community service providers or other key stakeholders. In all cases, consultations were also carried out with external stakeholder committees or networks who were not involved in the operational aspects of the research but provided valuable input to the research team. Plamondon et al. provided a perspective on working together that is not usually seen in the IKT literature. Her case had an international rather than a local focus. Knowledge user partners came from the global The cases help build community, including researchers, funders, policymakers, administrators our knowledge about and practitioners. The team developed normative values using IKT by challenging and deliberative dialogues to guide global health research in Canada. then evolving existing Case authors offered some interesting views on the challenges of theory-based literature. knowledge user engagement using IKT approaches. Not surprisingly, a few mentioned the importance of having financial resources to enable engagement and team-building. They also noted how critical it is to fully support non-researchers to participate. This support goes beyond money. For example, it is important to ensure that all team members understand the purpose of the research. Poole et al. and Letourneau et al. build on the idea of support by recommending that roles, progress, action items and time commitments be clearly articulated from the beginning and throughout the project. Thinking forwards, Dunn and colleagues pointed to the need to identify new and feasible ways of engaging a wider group of knowledge users when only a few can be on the research team. Finally, authors noted that actual or perceived power imbalances between research team members could interfere with the smooth functioning of the research, including effective decision-making. To overcome this challenge, Lewis et al. followed up with patients and their family members by phone after observing that clinicians had dominated a previous discussion; this allowed patients and family members to contribute their perspectives to the conversation. Gifford et al. described a collaboration between researchers and members of a Mohawk community, where mitigating power imbalances meant that the researchers needed to be acutely aware of the cultural dynamics underlying individual and community needs. Further understanding of the sources of power and how to ensure equitable distribution of power during an IKT relationship is sorely needed. We hope you enjoy this collection of cases. As always, we are open to hearing your reactions after reading them. IKTRN casebook | volume 2 | 2020 | p. 1 The experience of using an integrated knowledge translation approach to develop, implement and evaluate an audit and feedback system in Ontario maternal-newborn hospitals Sandra Dunn1-3, Jessica Reszel1,2,4, Deborah Weiss1,3, Ian D Graham3,4, Ann E Sprague1-3, Mark Walker1,3-5, on behalf of the Maternal Newborn Dashboard team 1Better Outcomes Registry & Network (BORN) Ontario; 2Children’s Hospital of Eastern Ontario Research Institute; 3University of Ottawa; 4Ottawa Hospital Research Institute; 5The Ottawa Hospital Keywords: audit and feedback; dashboard; maternal-newborn; mixed-methods; integrated knowledge translation BACKGROUND Project in Ontario hospitals. As such, the knowledge users Audit and feedback compares health-care engaged in this project included representatives provider practice to evidence-based benchmarks from these three groups (Table 1). with the aim of improving clinical practice and related outcomes.1 Evidence from a Cochrane DESCRIPTION OF IKT ACTIVITIES review1 supports use of audit and feedback as an We adopted an integrated knowledge translation effective strategy to improve practice, and a (IKT) approach to guide two phases of the project. number of studies suggest that use of a Phase 1 involved the development of the dashboard may improve quality of care and dashboard (the innovation, the audit and feedback patient outcomes.2-5 In Ontario, wide variation in system, to be implemented). Phase 2 involved the clinical practice and patient outcomes exists in evaluation of the effectiveness of the dashboard maternal-newborn care. For this reason, the in terms of improving practice. Better Outcomes Registry & Network (BORN) Ontario developed, implemented and evaluated an Establishing the IKT partnership electronic audit and feedback system, the Members of the IKT partnership were nominated Maternal Newborn Dashboard, in all hospitals following a call to join the provincial Maternal providing maternal-newborn care in Ontario. The Newborn Outcomes Committee. To fulfill the dashboard was designed to facilitate improved membership requirements, an additional call was maternal-newborn care by visually indicating extended to the broader BORN community. evidence-practice gaps related to six selected key Committee members were chosen based on their performance indicators and providing direction for clinical expertise and experience with quality practice change. improvement in their maternal-newborn settings, which covered all levels of care. Some of the Knowledge users partnerships established during the dashboard The target audience for the audit and feedback development phase carried forward to the system was (1) health-care providers, (2) decision evaluation phase with stakeholders participating makers, and (3) leaders of maternal-newborn care through all phases of the project (Table 1). IKTRN casebook | volume 2 | 2020 | p. 2 Table 1. Project phases and team members Committee with combined membership of Team researchers and knowledge users (clinicians and Phase * = Knowledge user decision makers) from across the province. Development Dashboard development committee *Obstetrician (OB) / Maternal The development process first involved Fetal Medicine