Her Heart Matters: Uncovering the Cardiac Pain Experiences of Women with Disabilities through Patient Journal Mapping
Principal Investigators:M. Parry, AK. Bjørnnes
Co-Investigators:H. Clarke, L. Cooper, D. Hart, C. Lalloo, J. McFetridge-Durdle, M. McGillion, C. Norris, L. Pilote, J. Price, J. Stinson, J. Watt-Watson
Background and Objective: Globally, women have greater cardiovascular morbidity and mortality compared to men, and women with physical disabilities have 6.6 times higher odds of coronary artery disease and 5.9 times higher odds of having cardiac pain/cardiac symptoms compared to women without disabilities. There is limited evidence describing the cardiac pain experiences in women with disabilities. We are partnering with the Network of Women with Disabilities (NOW), the Canadian Council of Disabilities (CCD) and the DisAbled Women’s Network (DAWN) of Canada to learn how to improve decision-making, access and quality of care for women who have disabilities and cardiac pain/cardiac symptoms through patient journey mapping.
Methods:This project will utilize a qualitative collaborative approach that engages women over 40 years living with a mobility disability (e.g., paraplegia, quadriplegia, osteoarthritis, etc.) and cardiac pain/cardiac symptoms, health care providers, researchers, and healthcare human factors designers. The project will include three phases informed by Boyd’s six steps for healthcare co-design: Phase 1 Discover – explore cardiac pain experiences through semi-structured interviews, Phase 2 Develop – create patient journey prototypes using interdisciplinary focus groups, and Phase 3 Disseminate.
Development and Usability Testing of at heart: An Integrated Smartphone and Web-Based Intervention for Women with Cardiac Pain and Cardiac Symptoms
Principal Investigators: M. Parry, H. Clarke
Co-Investigators: AK. Bjørnnes, J. Cafazzo, L. Cooper, A. Dhukai, P. Harvey, J. Katz, C. Lalloo, M. Leegaard, F. Légaré, J. McFetridge-Durdle, M. McGillion, C. Norris, R. Patterson, L. Pilote, L. Pink, J. Price, J. Stinson, JC. Victor, J. Watt-Watson
Collaborators: C. Auld, C. Faubert, D. Park, M. Park, B. Rickard, V. Spiteri DeBonis
Funding: Canadian Institutes of Health Research (CIHR) Project Grant
Background and Objective: More women die of coronary artery disease (CAD) than cancer, chronic lower respiratory disease, Alzheimer’s disease, and accidents combined. Coronary artery disease is also the leading cause of death of women across all ages, and recent data show an increase in CAD incidence and deaths in women younger than 55 years of age. Women with CAD have cardiac pain and other symptoms that differ from that of men. The overall goal of this program of research is to develop and systematically evaluate an integrated smartphone and web-based intervention (at heart) to provide evidence-informed symptom triage and self-management support to reduce cardiac pain/cardiac symptoms and increase health-related quality of life in women with heart disease.
Methods: This study uses a mixed methods strategy used for the development of the at heart content/core feature set (Phase 2A), usability testing (Phase 2B) and evaluation with a pilot randomised controlled trial (RCT) (Phase 3). We are using the individual and family self-management theory, mobile device functionality and pervasive information architecture of mHealth interventions, and following a sequential phased approach recommended by the Medical Research Council to develop at heart. The Phase 3 pilot RCT will enable us to refine the prototype, inform the methodology and calculate the sample size for a larger multisite RCT (Phase 4, future work). Patient partners have been actively involved in setting the at heart research agenda, including defining patient-reported outcome measures for the pilot RCT: pain and health-related quality of life.
Family Carers and COVID-19: a rapid integrated mixed methods systematic review
Principal Investigators: M. Parry, AK. Bjørnnes
Co-Investigators: N. Nickerson, K. Warkentin, H. Burnside, S. Hemani, C. Norris, E. Peter, L. Pilote,
Collaborators: S. Mohammed, M. Nylen-Eriksen, A. Coupal (The Ontario Caregiver Organization)
Funding: Canadian Institutes of Health Research (CIHR) Operating Grant
Background and Objective: Family caregivers provide unpaid personal, psychological, physical, social and financial care. They provide unpaid care and are the backbone of the healthcare system; 28% of Canadians are current caregivers and 46% will be caregivers at some point in their lives. Over one-half (54%) of caregivers are women between the ages of 45 and 65 years. By 2035, the annual unpaid caregiver contribution to the Canadian health care system is estimated to be $128 billion. Caregivers perform duties with little protective equipment, balancing work with added caregiving responsibilities. In addition, when loved ones are admitted to hospital for treatment, caregivers are separated from their family member, when comfort and care is needed most. The overall goal of this rapid integrated mixed methods systematic review is to determine what is known about the mental health and wellbeing of family caregivers during communicable disease outbreaks, such as COVID-19.
Methods: This study builds on previous experience and expertise in knowledge synthesis using methods described by the Evidence for Policy and Practice Information (EPPI) and the Coordinating Centre at the Institute of Education. The firststep in the EPPI review process involves a broad mapping exercise to retrieve, screen and classify the published and unpublished evidence. The second step in the EPPI review process is to present and discuss the results of our broad mapping and screening exercise with our collaborators and investigators. The third step in the EPPI process is to conduct two-rapid parallel COVID-19 systematic syntheses. The first parallel syntheses is focused on bimonthly (i.e., every two months) systematic searches of the published/unpublished literature. The second parallel synthesis is focused on a systematic review of the grey literature. Both parallel syntheses will help us determine: 1) the mental health and wellbeing of family caregivers across ethnicities, ages, and sex/gender, and 2) national and international resources, knowledge translation approaches, practices and platforms used to improve the mental health and wellbeing of family/unpaid caregivers during COVID-19.
Building Capacity for Patient-Oriented Research (POR) in Clinical Trials, TranSlaTing the Evidence into Practice, Policy and Outcomes: The POR STEPP Digital Health Project in Ontario
Principal Investigator: M. Parry, A. Najam (Patient Partner)
Co-Investigators: T. Ceroni (Patient Partner), S. Hemani, AK. Bjørnnes, A. Ellis, I. Gilron, M. Park (Patient Partner), D. Richards, K. Toupin-April, D. Wells (Patient Partner)
Collaborator: S. Marlin (Clinical Trials Ontario-CTO)
Funding: Ontario SPOR Support Unit EMPOWER Digital Award
Background and Objectives: We used the Strategy for Patient-Oriented Research (SPOR) Capacity Development Framework and the SPOR Patient Engagement Framework, partnered with CTO to build Patient and Investigator Decision Aids (https://www.ctontario.ca/patients-public/resources-for-engaging-patients/decision-aids-for-patient-partner-engagement-with-clinical-trials/). These decision aids will make a significant contribution to Canada’s strategy for patient-oriented research (POR) and will support the collaborative efforts of patients and investigators to build a sustainable, accessible and equitable health care system. Patients are the heart of the POR strategy; our patient partners have been actively engaged and will continue to partner and co-lead this digital health project. This project is guided by the IDEAS (Integrate, Design, Assess and Share) framework and toolkit and the World Health Organization’s (WHO) framework for disseminating and scaling up innovations. The aims of this project is to: 1) engage multi-stakeholders and develop a knowledge translation and scaling-up strategy for wider effects and reach, 2) build relationships and translate knowledge about patient and investigator decision aids using multiple information and activity streams, 3) push our patient and investigator decision aids to those who could use them provincially, and 4) integrate end-users to translate knowledge to increase impact through policy briefs, public forums, conference presentations, open-access publication, and social media.
Methods: We will engage multi-stakeholders in workshops to disseminate POR and decision aid knowledge and ideate creative dissemination and scaling up strategies. POR and decision aid training workshops will be delivered by the Co-PI (Parry) or Co-I (Richards) and a patient partner co-investigator (Najam/Wells) to interested patients, investigators, decision makers, health charity and patient organizations. Knowledge obtained through this award will inform strategies for scaling up the POR STEPP Digital Health Project nationally and internationally. We will assess the attributes that determine scalability and identify needed actions using our ‘hot-line’ notes and a brief semi-structured interview guide based on the WHO. Results will be disseminated through policy briefs, public forums, conference presentations, open-access publication, and social media.
Patient Engagement Partnerships in Clinical Trials (PEP-CT): Systematic Development and Testing of Patient Partner and Researcher Decision Aids
Principal Investigators: M. Parry, T. Ceroni
Co-Investigators: H. Ansari, AK. Bjørnnes, H. Burnside, S. Cavallo, A. Day, S. Ellis, D. Feldman, I. Gilron, A. Najam, M. Park, D. Richards, K. Toupin-April, D. Wells
Collaborator: S. Marlin (Clinical Trials Ontario)
Funding: Canadian Institutes of Health Research (CIHR) Project Grant
Background and Objectives: Building capacity to improve the uptake of sex/gender and strengthen research partnerships in clinical trials requires training and support. Our innovative web-based open-access patient partner and investigator decision aids will transform knowledge and help build capacity for sex/gender uptake and patient-oriented research in Canada. We have included enablers of decision aid utilization, including online delivery, organizational endorsement, and utilization of a strong implementation and dissemination plan. We have also integrated POR principles and practices by engaging patient partners across all phases of our program of research. Patient partners have: 1) identified research priorities/search terms, 2) developed grant proposals, 3) designed decision aids, 4) collected/analyzed data, and 5) disseminated results through conference presentation and publication. The overall goal of this 2-year project is to refine, translate and evaluate two decision aids (patient and investigator) designed in Phase 1A (CIHR-funded) and Phase 1B (Ontario SPOR Support Unit [OSSU]-funded) to improve sex/gender uptake and patient engagement partnerships in clinical trials (PEP-CT).
Methods: Refinement and evaluation of the decision aids to improve patient partnerships in clinical trials is guided by the International Patient Decision Aid Standards, User-Centered Design and the Ottawa Decision-Support Framework. Funding from the Ontario SPOR Support Unit allowed us to brainstorm and disseminate our web-based open-access patient and investigator decision aids in Ontario. Relevant feedback from that phase of the project will be incorporated into further decision aid refinements and then each will be translated to French, refined though iterative cycles of usability testing (alpha testing) with end-users (patients and investigators), and evaluated using a pragmatic pre/post pilot study (beta [field] testing). Results of the pragmatic pre/post pilot study of bilingual decision aids will establish the extent to which each decision aid is feasible in terms of implementation (acceptability, engagement and fidelity). We have followed rigorous processes to evaluate all relevant quality criteria for decision-making processes. Field/beta testing will enable us to finalize, disseminate and evaluate adoption of these open-access web-based innovations.