Read about the poster sessions from last year's conference (PPF18) below.
Using Photovoice for Patient-oriented Research: Understanding the Mental Health Experiences of Adults 50 years and Older Living in the Similkameen
Lauren Airth1, Nelly D. Oelke2, Carolyn Szostak3, Sharon Evans4, Karen Fulton5, Nola Mensch
1 UBC, Okanagan, 2School of Nursing, UBC, Okanagan, 3 Department of Psychology, UBC, Okanagan, 4 South Okanagan Similkameen Mental Wellness Society, 5 Interior Health Authority
Introduction and Background: This research aims to understand the experiences of adults 50 and over who have mental health concerns in rural Southern Interior B.C.
Little research has focused on the experience of rural older adults with mental health concerns. Stigma is a significant issue in rural communities, particularly with older adults, impacting access to treatment despite proven benefits. Stigma is also perpetuated by clinicians prioritizing physical over mental health.
Methods: Critical theory underpins this research focusing on power imbalances in society requiringreflection and action on knowledge created 5. Photovoice provides participants with the opportunity to tell their stories and acknowledges multiple realities 6. Ten adults 50 and over will participate in the study. Data collection includes: 1) Focus group to collectively identify what participants would like others to know about their experiences with mental health concerns in this community; 2) Participants to take photos related to the themes; 3) Individual interviews with participants to discuss photos' significance; and 4) Focus group to discuss knowledge translation (KT) approaches.
Preliminary Results: Preliminary results from the research will be shared.
Discussion: This methodology is well aligned with patient-oriented research where community members are actively engaged in determining the direction of the research, collecting data, and sharing results. We use an integrated KT approach by including a community member and decision-maker as equitable team members and involving them in all aspects of the research. Furthermore, this study will give voice to a marginalized population. It will increase awareness and has the potential to reduce stigma in the community. Furthermore, it will contribute to healthcare providers' ability to make informed decisions regarding the care of rural older adults.
Dissemination and Knowledge Translation Approach: Knowledge translation will be determined by participants and may include a gallery showing or photobook. Results will also be shared via community and conference presentations, and publications.
Child-Sized Knowledge Translation
Shazhan Amed 1,2, Ian Pike 3, Kishore Mulpuri4, Stephanie Glegg5, Julie Rolliard6, Elodie Portales-Casamar7, Louise Masse8, 9, Mariana Brussoni9, 10, Janet Mah11, John Jacob12, Rosa Livingston13, Jenny Morgan14
1 BC Children’s Hospital, Department of Pediatrics, 2 BC Children’s Hospital Research Institute, 3 Department of Pediatrics, BC Children's Hospital Research Institute, 4 Department of Orthopaedics, BC Children's Hospital Research Institute, 5 Department of Occupational Science & Occupational Therapy, Knowledge Broker and Facilitator, Sunny Hill Centre for Children, 6 Faculty of Medicine, BC Children's Hospital Research Institute, 7Department of Pediatrics, BC Children's Hospital Research Institute, 8 School of Population and Public Health, 9 BC Children's Hospital Research Institute, 10 Department of Pediatrics, School of Population and Public Health,11Department of Psychiatry, BC Children Hospital Research Institute, 12Department of Pediatrics, Senior Director Digital Lab team BCCH & UBC Pediatrics, 13 Family/Community Partner, 14BC Women's and Children's Hospital, Director, Indigenous Health
Objective: The objective of this study is to engage patients, families and practitioners, healthy children and youth, in a participatory approach to enable meaningful and sustainable engagement for the design, development and evaluation of a robust, interactive knowledge translation platform called Child Sized KT.
Methods: Eight consultation meetings were held over the course of one year. Participants included clinicians, researchers, administrators and managers, high-level decision-makers and parents. During each consultation, stakeholders were asked about their views on patient engagement in research, specifically, barriers and facilitators to engagement; skills or resources needed to maximize engagement, strategies for engaging those that do no typically participate; potential platforms and their functionalities; and opportunities and obstacles to moving into the development phase. In addition to these consultations, over 500 parents across BC completed an online survey, including those who have accessed care at BCCH through the diabetes clinic. The survey explored parent perspectives on engaging in research at BCCH and doing so through an online platform.
Results: Both parents and practitioners felt they could contribute the most to identifying the problem, developing the research question and sharing the results. Stakeholder perspectives on barriers and facilitators to engagement fell into 5 categories: resources, value, interpersonal connection, opportunity and culture.
Conclusion and Knowledge Translation Approach: There is strong interest from all stakeholders to facilitate patient engagement in research at BCCH. A platform that is accessible, personal and offers all opportunities to those who are interested will maximize entry points into research.
The PREFeR (PRioriEtes For Research) Project: Rapid literature reviews on the top 10 patient-identified topics for primary health care research in British Columbia
Dhwani Babla 1, Nathaniel Tok1, Louisa Edwards1,2, Ruth Lavergne1,3
1 Faculty of Health Sciences, Simon Fraser University, 2 Centre for Clinical Epidemiology and Evaluation,Vancouver Coastal Health Research Institute, 3 UBC, Centre for Health Services & Policy Research
Introduction and Background: Much of primary care research focuses on understanding patient needs and gaps in care, but patients are infrequently included in prioritizing research ideas. PREFeR (PRioritiEs For Research) conducted rapid literature reviews based on patient-identified priorities for primary care research in British Columbia. These will reveal under-researched topics for future studies.
Methods: A Patient Advisory explored experiences of primary care, generating 10 key topics. Rapid literature reviews were carried out in MEDLINE for published research conducted within BC and Canada. Topic-specific search strategies were constructed for English language publications from 2008-2018. All searches included 'primary health care' and province/country terms. Two reviewers independently screened abstracts/titles for relevance to the topics. Number and proportion of included BC and Canadian papers were summarized.
Results: The number of papers initially extracted for the 10 topics ranged from 1 to 56 (BC) and 13 to 442 (Canada). After abstract screening, the topics with the fewest papers were Improving continuity and coordination (BC: n=1; Canada: n=1) and Mental health resources (BC: n=1; Canada: n=34). Conversely, topics with the most research were Accessing care when/ where needed (BC: n=56; Canada: n=702) and Care guided by patient needs, values, preferences, priorities (BC: n=39; Canada: n=442).
Discussion: Findings showed wide variability in the extent of published research among the 10 topics within BC and Canada, but the relative proportion of hits was similar for BC and Canada. Improving continuity/coordination and mental health are under-researched areas, but important to patients. Prioritizing future primary care research with patients is feasible, fruitful and benefits the end-users.
Dissemination and Knowledge Translation Approach: Patient partners will contribute to papers and conference presentations, press releases and the final report, which will be made publicly available. Ultimately, patient priorities will drive future funding applications.
Learning Together: Initiating an integrated knowledge translation process to explore patient engagement in Canadian Circulatory and Respiratory Research Networks
Banner, D.1, Bains, M.2,3, Caroll, S.4 Aaron, S.5, 6,7, Healey, J. 8, 9, 10, Stewart, D.11, 12, 13 Tang, A.14, 15, Runte, M.2, 16, McGavin, C.17 Wong, C.18, Kandola, D.19, Graham, I.D.20, 21
1 Associate Professor, School of Nursing, University of Northern British Columbia (UNBC), 2 Patient Partner, 3 Vice President of HeartLife Foundation, 4 Associate Professor, School of Nursing at McMaster University, 5 Director, Canadian Respiratory Research Network, 6 Senior Scientist, Ottawa Hospital Research Institute & Chief of Respiratory Medicine, 7 Professor, University of Ottawa, 8 Chair of the Canadian Stroke Prevention Intervention Network, 9 Director, Arrhythmia Services at Hamilton Health Sciences, 10 Associate Professor, McMaster University, 11 Director of the Canadian Vascular Network, 12 CEO and Scientific Director of the Ottawa Hospital Research Institute, 13 Professor, University of Ottawa, 14 CEO of the Canadian Arrhythmia Network, 15 Professor, Western University, 16 Associate Professor, University of Lethbridge, 17 Patient Engagement Lead at the BC SUPPORT Unit (SPOR), 18 Executive Manager, Centre of Excellence of Partnership with Patients and the Public, 19 Doctoral student and Research Associate, UNBC, 20 Professor, School of Epidemiology, Public Health and Preventative Medicine at the University of Ottawa, 21 Senior Scientist at the Ottawa Hospital Research Institute
Introduction and Background: Circulatory and respiratory diseases (CRDs) are a major cause of morbidity and mortality, accounting for significant healthcare expenditure in Canada and beyond. As rates of CRDs continue to rise, healthcare organizations are becoming challenged to develop and implement services that are evidence-based and improve outcomes. Despite this growing focus, variations in healthcare delivery continue to adversely impact patient care and outcomes. Patient engagement in healthcare and research has been hailed as an important mechanism to address these ongoing concerns. This poster will present the process of initiating an integrated Knowledge Translation (iKT) process to examine patient engagement in CRD research.
Methods: To initiate this work, our team worked to foster team building and co-create a successful application for funding to support partnership development and patient engagement. Our team encompasses a broad range of knowledge users, patients and researchers interested in patient-orientated research.
Results: Research that is underpinned by the iKT process requires early and sustained collaboration between researchers, stakeholders and national networks. In order for us to set up the conditions for ongoing collaboration, we first needed to secure funding to support early engagement activities, team development and priority setting. This poster will explore our journey to date, lessons learned, and will examine how we are working collaboratively to explore patient-orientated CRD research and to contribute to the science of iKT and patient engagement.
Discussion/Implications: Collectively, these early partnerships and team building activities provided a foundation for ongoing collaboration and a means to catalyze further research. By fostering these early connections, our group was able to mobilize rapidly to facilitate a successful funding proposal and cement a commitment to further patient-orientated research. By exploring our planning and engagement activities, we hope to share ideas for others interested in developing research that reflects the needs, values and priorities of patients.
Stroke through the eyes of a survivor: Lived experience as an opportunity for improving patient experience
Barbara Croome1, Davina Banner2, Daman Kandola2, Si Transken2,Haidar Hadi3, Barbara Hennessy4, Tanya Barrett5, Pam Aikman6
1 Patient Partner, 2 University of Northern British Columbia (UNBC), 3 Cardiologist, Northern Health Authority, 4 Consultant, Cardiovascular Health and Stroke, 5 University Hospital of Northern British Columbia, 6 Provincial Director, Provincial Health Services Authority
Introduction and Background: Stroke is an important public health concern in Canada. Those living in small urban, rural, and remote areas are particularly vulnerable to stroke and its consequences, particularly in light of the escalating levels of chronic disease and more limited access to specialized services and supports. To understand this further, we undertook an exploratory study aimed at gathering insights into the barriers and facilitators of stroke prevention and management in northern BC. A central aspect of this work was to provide an avenue for the patient voice through the sharing of personal stories of stroke.
Methods: Patient journey mapping was conducted with patients who had recent experience of stroke and we then partnered with patients to create innovative knowledge translation outputs to share this journey with healthcare providers, decision-makers and researchers. This work was underpinned by a trauma-informed integrated knowledge translation approach and involved cycles of in-depth qualitative interviews and art sessions. In congruence with the principles of patient-oriented research, these activities have been co-created with patients and has involved meaningful collaboration across the research process.
Findings and Knowledge Translation Approach: Significant gaps in stroke care exist in rural settings, including a lack of post-hospital supports and timely rehabilitation. This can leave many patients feeling abandoned as they recover from stroke. In this presentation, our patient partner will present her experience of navigating care and recovering from stroke in a rural community and will share a co-created interactive arts-based knowledge translation product. Our team will then present on our planned stroke care priority setting workshop. Through this, we have had the opportunity to share the patient voice with those developing and delivering services, as well as being a catalyst for wider community-based initiatives that foster the voice of stroke survivors, identify patient priorities, and inform initiatives to improve patient care.
Does SPOR mean MORE (Meaningful Opportunities for Research Engagement) for Patient Partners?
Chad Dickie1, Lisa Ridgway1, Taylor Hainstock2
1 Patient Partner, Vancouver Island SUPPORT Unit Regional Centre Oversight Committee, 2 Patient Liaison, Vancouver Island SUPPORT Unit Regional Centre
Introduction and Background: High-level patient engagement is key to ensuring the right patient receives the right intervention at the right time by including the patient voice on decision-making boards, committees and working groups. Identifying empowerment at this level of patient engagement is key to understanding and recognizing higher-level patient engagement that are meaningful.
Methods: Using the IAP2 Spectrum as a guide, we measured patient engagement on review boards, governance and oversight committees, and other decision-making, empowered activities since the inception of SPOR in BC in 2016. We identified empowered engagements to qualify and recognize valuable contributions. Select patient-partners were interviewed to identify characteristics of the meaningful engagement environment, whether the engagement increased patient-partner capacity, and improved overall understanding of SPOR goals, strategies and challenges.
Results: One patient-partner qualitative interview consisting of five questions was completed. Themes were identified for meaningful engagement, working with multi-disciplinary teams, and whether engagement improved policies and practices related to patients. We identified beneficial engagement environment and structure, invitations for meaningful contributions, equal voting rights, and patient healthcare system knowledge acquisition.
Discussion: By building a framework usable by other SUPPORT Units and SPOR initiatives across Canada, this project can measure patient research knowledge acquisition, improved understanding of POR linkages to the broader healthcare system and identify opportunities by sharing of patient-partner experiences.
Dissemination and Knowledge Translation Approach: Our data and information will be shared with photographs, charts and graphs that are easy to read, translatable to other languages, and visually appealing. Future iterations may include video. Our research will abide by all CIHR Responsible Conduct of Research guidelines and attained institutional and organizational ethics approvals as required. Participants will submit Informed Consent Forms including permission to share findings at sanctioned SPOR conferences and POR events. A framework model will be published and disseminated with SPOR across Canada.
From the heart: designing HeartHub.ca, a cardiovascular health information hub for patients, by patients
Maiorino JL 1, Miller KJ 1,6, Leese J2, Mamdani A1, Castelino C1, Hardiman S3, Tyler M4, Shepherd J5, Whitehouse T5, Humphries K1
1 BC Centre for Improved Cardiovascular Health, 2 Arthritis Research Canada & Department of Physical Therapy, University of British Columbia, Vancouver, BC, 3 Cardiac Services BC, Provincial Health Services Authority, BC, 4Providence Health Care, Vancouver, BC, 5 Patient Voices Network, BC Patient Safety & Quality Council, Vancouver, BC, 6 Sunny Hill Health Centre for Children, Vancouver, BC
Introduction and Background: Many patients told us in interviews/focus groups that when they had an angiography test to determine if they had coronary artery disease: 1) they were unaware a heart treatment decision might need to be made right away; and 2) they did not have the information they needed to support them in decision-making with their doctor. The aim of HeartHub.ca was to co-design web-based knowledge dissemination resources/tools with the intention of supporting patients to feel more confident and prepared to participate in evidence-informed heart treatment decisions.
Methods: The HeartHub.ca resources/tools were planned in a workshop of patient partners, decision-makers, researchers, and clinicians using patient information needs and preferences identified in patient interviews/focus groups. The quality of the workshop engagement was evaluated using the Public and Patient Engagement Evaluation tool (PPEET). Seven patient partners and four clinicians committed to co-designing the final HeartHub.ca content post-workshop. Ongoing feedback was sought from patients and clinicians. Patients awaiting angiography at St. Paul's Hospital were invited to view HeartHub.ca and complete a survey evaluating the usefulness of the website.
Results: All workshop participants (10/23) who completed the PPEET agreed/strongly agreed their views were heard and that the planned resources/tools would be useful. Of 30 patients who viewed HeartHub.ca as they awaited angiography, 76% agreed/agreed strongly they felt more confident and 74% agreed/agreed strongly they felt more prepared to make an informed treatment decision. Patients suggested they would have preferred to view HeartHub.ca before their hospital visit.
Discussion/Implications: Most patients felt more confident and more prepared to participate in informed heart treatment decisions after viewing HeartHub.ca, a knowledge dissemination website including tools/resources co-designed for patients by patients.
Dissemination and Knowledge Translation Approach: HeartHub.ca will be translated into three common languages. Our plan is for http://hearthub.ca/ to be included with other information sent to patients prior to their angiography appointments.
Co-research with people with dementia for change
Jim Mann1, 2, Lillian Hung 1,3
1 Vancouver Coastal Health, 2 Patient Partner, 3 Alzheimer Society Post-Doctoral Fellow
Research about patients with dementia in acute care has been traditionally designed and carried out by researchers with little or no involvement of people with dementia. Moving away from the old way of conducting research 'on' people with dementia, this study involved people with dementia as experts of lived experiences to 'co-develop' knowledge for change. This animated poster presents our shared experiences (a person with dementia, Jim Mann and a researcher, Lillian Hung) gained from an action research conducted at Vancouver General Hospital. Action research methodology was applied to the study, involving cycles of observations, plan, action, and evaluation. The study involved patients with dementia, families, and a team of interdisciplinary staff in a medical unit to inquire and take actions for improving dementia care in a medical unit. The research led to results of the co-creation of an education package, including an online game, staff training in dementia care, and integration of new clinical tools for better family communication. Jim and Lillian have co-authored a peer-reviewed paper to call for attention to everyday ethics, which go beyond the traditional principles in University Research Ethics prescribes. Based on our lessons learned, we developed a useful framework, ASK ME to inspire and support others to co-research 'with' people with dementia. ASK ME offers five practical tips for co-research with people with dementia: Avoid assumption, Support the person to do the best, Knowledge needed to be put into action and acknowledged, Meet regularly and early, and Ethical sensitivity and responsibility. We provide specific examples to illustrate challenges, strategies and possibilities in co-researching dementia care to making real impacts on hospital care for patients with dementia. Our study demonstrated that the positive relationship, featured with collaborative, reflexive and respectful approaches, was vital to enhance the quality and rigor of the research.
Integrated health services through primary health care teams: A comparative policy analysis
Oelke, N.D1, Jagroop, B.2, Ooms, S.3, Arsenault, D.4, Berg, S.5, Graham, P.6 Landry, G.7, Birdsell, J8, Montesanti, S.9, Johnston, S.10, Breton, M.11, Gaboury, I.11, Green, L.9, Maiwald, K.4, Mallison, S.,12 Martin Misener, R.13
1UBC Okanagan, 2BC Patient Partner, 3BC Ministry of Health, 4 Interior Health, 5Alberta Health, 6Ontario Ministry of Health and Longterm Care, 7 Ministère de la Santé et des Services Sociaux du Québec, 8 Alberta Patient Partner, 9 University of Alberta, 10 University of Ottawa, 11 University of Sherbrooke, 12 Alberta Health Services, 13 Dalhousie University
Introduction and Background: Improving health services integration for complex patients is challenging given the increasing complexity of patients and services they require. Team-based primary health care (PHC) models have been developed and implemented in diverse ways across Canada to improve patient experience and better coordinate care to improve population health and reduce costs. Evidence remains mixed regarding impact and determining which policies/structures facilitate, incentivize, or promote integration. The aim of this study is to examine policies/structures that support service integration for complex patients through PHC teams.
Methods: This cross jurisdictional study (BC, AB, ON, QC) will use case study methodology. Phase 1: A document review of provincial and regional level policies/structures on PHC teams and integrated service delivery with individual (by province) and cross-case analysis will be completed. Phase 2: Interviews and deliberative dialogue (DD) will be conducted with patients/caregivers in each province to explore how they are and would like to be involved in policy development and implementation for PHC teams and integration. Phase 3: We will seek feedback on the research results from provincial and national stakeholders, including patients, through a series of online and virtual discussions. Recommendations and actions will be developed.
Results: The protocol for the study will be presented. Discussion/implications: We will better understand policies/structures supporting integrated services delivery through PHC teams, how they do so, and when and how unintended consequences impede progress. Furthermore, we will understand how patients/caregivers wish to be involved in policy development and implementation. This study is timely and will allow provinces to learn from each other.
Dissemination and Knowledge Translation Approach: We will use an integrated KT approach with the inclusion of knowledge-users, including patients, on our research team. Phases 2/3 use IKT approaches through DD and virtual discussions. One-page summaries, presentations and peer-reviewed publications will also be used.
Can-SOLVE CKD Network: Indigenous Peoples' Engagement and Research Council
1 Can-SOLVE CKD Network
Introduction and Background: Kidney disease has a strong impact on the health of Indigenous communities; therefore, strategies to improve kidney health must include culturally appropriate engagement of Indigenous peoples. The Can-SOLVE CKD Network is a patient-oriented initiative that is working to improve the kidney health of Canadians and bring Indigenous ways of knowing into health research.
Methods: Can-SOLVE CKD has created an Indigenous Peoples' Engagement and Research Council (IPERC) to support collaboration grounded in traditional values and partnerships with Indigenous communities. Membership includes Indigenous patients, caregivers, researchers, and community leaders. Using an ethical framework that encompasses the principles of ownership, control, access and possession, IPERC guides Can-SOLVE CKD in respectful engagement of Indigenous peoples in research.
Results/Findings: IPERC has created a culturally safe space for Indigenous individuals to participate in all aspects of patient-oriented kidney research. The council has instituted guidelines on ceremony and Elder participation that ensure recognition of traditional knowledge and territories. IPERC is also creating a cultural safety learning pathway, including a training module for health researchers and policy-makers.
Discussion/Implications: Through IPERC, the Can-SOLVE CKD Network offers a model for respectful engagement of Indigenous communities in health research. By adopting Indigenous ways of knowing and fostering cultural competency, the network is working to close the gaps in kidney health outcomes between Indigenous and non-Indigenous communities.
Dissemination and Knowledge Translation Approach: IPERC members have engaged in outreach to the broader research and educational communities through oral and poster presentations. A variety of resources are available online through the Can-SOLVE CKD website and social media, and members are also socializing with other SPOR networks and research entities to advocate for change in practice.