Report to Community
2023-2024
Partnering in Research that Matters
We believe people’s lived experience makes health research stronger by asking questions that matter to patients.
Reducing stress for breast cancer patients
The Maritime SPOR SUPPORT Unit led a patient-oriented research project in Saint John, New Brunswick, which provided essential evidence for expanding an innovative care model for rural breast surgery patients. The program, a collaboration between the Breast Health Program and Delta Hotels, offers outpatient lumpectomy and mastectomy patients living over 100 km away from the hospital a night of free accommodations, meals, parking, and extramural care.
With 51% of New Brunswick’s population in rural areas, many patients must travel long distances or bear extra costs. Researchers, including two Patient/Public Partners, Karen Irving and Peggy McLean, evaluated the Delta Oasis program to inform the development of similar initiatives in Moncton and Fredericton. Their insights, especially regarding post-surgery household challenges, were crucial in shaping the findings, which showed the program reduced financial and emotional stress.
Despite initial challenges in expanding the program to other cities, the persistence of a Patient/Public Partner helped secure cooperation from Delta Hotels in Moncton and Fredericton, leading to the program’s successful expansion.
Inclusive digital mental health for youth
Last fall, the Maritime SPOR SUPPORT Unit (MSSU) played a key role in enhancing mental health services in Nova Scotia by supporting a project focused on inclusivity in digital mental health resources. Partnering with IWK Mental Health and the DIVERT Mental Health platform, MSSU co-hosted an event to gather feedback on developing more inclusive mental health supports for youth, particularly amid Nova Scotia’s growing and diversifying population.
The event brought together 38 participants, including policymakers, clinicians, researchers, and equity advocates, to discuss anti-racism, diversity, and inclusion in youth mental health care. Dr. Lori Wozney, Scientific Lead for Mental Health at IWK, praised MSSU’s guidance in structuring the event to maximize diverse input and prioritize recommendations.
The feedback gathered will inform training for service developers through DIVERT and shape IWK’s strategic plans, improving digital mental health care for diverse populations. The event also fostered new collaborations, resulting in co-authored publications, grant applications, and continued conversations among participants. Dr. Wozney highlighted that MSSU’s support was crucial in enabling effective knowledge exchange and driving significant impacts on health service and research decisions.
Improving child supports during crises
During the COVID-19 pandemic, families with children who have complex care needs faced significant challenges due to strict public health measures, which limited access to in-home support and vital educational resources. In the Maritimes, these challenges were amplified by fragmented health systems and the reliance on a single pediatric care facility for the region. Recognizing the burden on these families, the Maritime SPOR SUPPORT Unit (MSSU), led by Dr. Janet Curran, launched a study to examine the pandemic’s impacts and inform better care practices for future crises.
Patient and community partners, including parents of children with complex needs like Julie Clegg, were central to the research. These partners contributed to the entire research process, ensuring the study reflected lived experiences. The study included a sex- and gender-based analysis to uncover health inequities and explored socio-structural determinants such as gender, race, and disability.
The research resulted in a set of recommendations aimed at improving healthcare and support systems for these vulnerable families. By grounding the study in lived experience and patient-oriented research, MSSU ensured the findings are relevant and can drive meaningful change in health care practices for children with complex care needs.
MSSU Launches Peer Navigation Program to support new Patient/Public Partners
In 2023, the Maritime SPOR SUPPORT Unit (MSSU) introduced a Peer Navigation Program aimed at providing guidance and support to Patient/Public Partners (PPPs) who are new to the MSSU or interested in expanding their understanding of patient engagement in research or governance. This initiative reflects MSSU’s commitment to fostering meaningful patient and public involvement in health research, ensuring new partners feel empowered and supported as they navigate their roles.
“The program not only helps new partners build confidence and capacity but also fosters a community of shared learning and support that is essential to advancing patient-oriented research across the Maritimes,” says Linda Verlinden, MSSU Patient/Public Partner Council member.
The Peer Navigator Role
The Peer Navigation Program pairs new Patient/Public Partners with experienced peers who can provide guidance based on shared interests, skills, and backgrounds.
As part of the mentorship, navigators can help new partners develop coping strategies, recognize their strengths and talents, and encourage them to use these skills in their involvement. They may also assist new partners in finding relevant resources that align with their interests. The program emphasizes confidentiality, respect for lived experience, and fostering a safe, inclusive environment for all participants.
“Having a navigator made all the difference. They helped me understand my role, guided me through the process, and gave me the confidence to use my voice. I felt supported every step of the way, knowing that my experiences were valued and that I was truly making a difference in health research,” Darshana Saravanan, new MSSU Patient/Public Partner.
Through this initiative, MSSU continues to emphasize the value of lived experience, creating a research environment that truly reflects the needs and perspectives of the people it serves.
We build partnerships with researchers and patients to improve health care.
Refreshed patient-oriented research training
This year we refreshed our patient-oriented research training program to make it easier to access and fit into the busy schedules of our participants. Launching in September 2023, the new format replaced the previous two, half-day sessions with a single, immersive 2.5-hour session. This practicum focuses on patient engagement specific to the Maritimes, providing participants with hands-on experience and an opportunity for networking and dialogue amongst participants.
We aim to be responsive to the learning needs of participants and provide practical advice and resources to maximize the benefits and minimize challenges of patient engagement in research. Topics may include: recruiting for diversity, creating welcoming inclusive spaces, navigating power dynamics, considerations for engaging people who have experienced inequities, and trauma-informed engagement practices. The purpose of this course is not to provide an all-encompassing training, but to get people started on their patient engagement in research journey.
To enroll, participants must first complete the self-paced learning modules from the Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA). This approach ensures that participants gain both an understanding of the foundational concepts of POR and their practical application, creating more impactful and relevant research.
“I really enjoyed the group activity because I felt that organic and productive conversations were had about patient engagement throughout the research process from start to finish. I also felt very moved by the Patient/Public Partner’s personal story that was shared because it demonstrated how impactful being a part of a research project has been for them and why patient engagement is so important.” –POR Practicum Participant
Record-setting year for Trainee Support Program
The Maritime SPOR SUPPORT Unit (MSSU) received a record number of applications in 2023, showing the increasing interest and value placed on MSSU and patient-oriented research.
This year, applicants came from a wider range of backgrounds—not only from medical fields but also from areas like Adult Education in Health from St. Francis Xavier University, Computer Science and Pharmaceuticals.
Patient/Public Partners have been involved in every step, from helping rebuild the program in 2021 to reviewing and selecting candidates. Donna Rubenstein, a selection committee member, shared, “It’s wonderful to see the positive impact of the improvements we made, along with the growing awareness, interest, and quality of applications.”
What does this mean for MSSU? With more applicants, we can bring in diverse perspectives and experiences, helping us expand our support to a broader range of research projects and learn from new viewpoints. This milestone reflects our commitment to quality in patient-oriented research education and trainee support.
Quote: Dr. Mari Somerville, MSSU Scientist
“I have had several opportunities to learn about and work directly with patient partners. I completed the MSSU patient-oriented research training, which provided such meaningful insight into the importance of including patient partners in all aspects of my research. I’ve also worked closely with patient partners across the Maritimes on several MSSU projects. This experience has been invaluable as I get to see the direct impact of our work on individuals in the community. The resources and connections I’ve gained as an MSSU Scientist have enhanced my research and have empowered me to contribute more meaningfully as I work to improve healthcare practices in our region.”
We work together to turn evidence into action.
Keeping Up with Knowledge Translation
Now in its fourth year, the Keeping up with Knowledge Translation webinar series continued to attract a range of health system stakeholders from across the Maritimes and beyond, with nearly 500 registrants for three sessions. The first session introduced the Learning Together framework, which will be used to plan and evaluate patient engagement at the MSSU. Later sessions focused on Learning Health Systems (LHSs), starting with a session focused on the new MSSU LHS graphic. This graphic illustrates the concept of LHS, and connects elements of the framework to MSSU supports and services. This was followed by a session exploring how CIHR Health Impact Fellows are supporting LHS approaches in Nova Scotia. As in previous years, the sessions highlighted research and organizations in the Maritimes, and two were co-presented by Patient/Public Partners.
Co-creating a resource for understanding health data
The landscape of the health data and its use are rapidly evolving. Advances in electronic health records, the introduction of new health data applications, and the adoption of Learning Health Systems approaches that leverage health data for healthcare improvement and innovation have created new opportunities to harness health data for public good. However, in this rapidly changing landscape, the public may not have a good understanding of health data and how it is used. In 2023/24, the MSSU engaged four Patient/Public Partners to co-develop the Health Data Basics document to introduce the concept of administrative health data – what it is, how its collected and protected, and how it can be used to improve health and healthcare.
Supporting Collaborative Family Practice Teams in Nova Scotia
In 2023/24, the MSSU published a visual summary of implementation strategies to support the implementation of Collaborative Family Practice Teams (CFPTs). These strategies were identified during a knowledge sharing event held in October 2022. The event brought together CFPT clinical and administrative staff, health service managers, government stakeholders, and patients and caregivers to co-develop ways to address barriers and enablers to the implementation of CFPTs in Nova Scotia. Five overarching implementation strategies were identified, with specific actions that could be taken to optimize scope of practice for patients and providers; organize regular and accessible meetings; support team and professional development opportunities; and support non-clinical activities. Findings from a related literature review, and previous survey along with the knowledge sharing event were published in BMC Primary Care, presented in a national forum, and in June 2023, the research team shared findings and a visual summary of implementation strategies with Nova Scotia Health Primary Health Care (PHC) leaders.
“These research findings built from direct feedback and experience of patients, providers and leaders, are helping us to advance ongoing efforts to establish new and strengthen existing collaborative primary care teams across Nova Scotia.” -Lindsay Cormier, Manager Planning and Development, Primary Health Care and Chronic Disease Management Network, Nova Scotia Health
We make health data easier to access across the Maritimes.
Nova Scotia data centre joins national effort to studying spinal muscular atrophy and dementia
Health Data Nova Scotia (HDNS) participated in Health Data Research Network Canada’s (HDRN Canada) pan-CANadian data Analytic Service for Knowledge users (CAN-ASK) (formerly called Real World Evidence Service (RWES)) initiative and was one of three provinces (AB, ON and NS) to complete two rapid response projects by the April 1, 2024 deadline. One project focused on patients diagnosed with spinal muscular atrophy (SMA) and the other focused on those diagnosed with dementia. Both projects involved investigating health care use of these patients and involved linkage between several HDNS databases including physician billing data, hospitalization records, prescription data and more. The main purpose of these projects was to better understand barriers and enablers to serving pan-Canadian health sector organizations with data analytic services. This required a great deal of collaboration with the central CAN-ASK team and other provinces involved. HDNS quickly responded to adjustments to the data request and analytic plan to complete the projects within a short time frame.
“We have appreciated working with HDNS on several projects over the years. Most recently, HDNS has supported our team to conduct a research study that aims to develop a predictive model to help clinicians decide when to order diagnostic imaging for patients who present with low back pain… Throughout our project, the HDNS team has been extremely helpful and responsive. Without the expert support of the team at HDNS, we would not be able to conduct a study like this in Nova Scotia.” – Jill Hayden, Researcher
Unique data linkage sheds light on newcomer health needs and gaps in New Brunswick
A Newcomer Health Study at New Brunswick Institute for Research, Data and Training (NB-IRDT) is connecting federal immigration landing records with New Brunswick’s health and demographic data. This unique approach allowed researchers to better understand healthcare patterns among newcomers, providing insights that can help improve health services for new residents in the province.
Researchers tracked and analyzed specific categories such as permanent and temporary residents and compared these patterns with those of long-term residents and Canadian-born individuals. By linking these datasets, the study could identify trends—for instance, higher use of walk-in clinics over general practitioners by newcomers, potentially due to initial barriers to primary care. Additionally, it revealed regional variations in emergency room visits, particularly in the Madawaska and North-West Area (Health Zone 4).
By linking immigration and health data, the study reveals how health service use varies among newcomers based on visa type, country of origin, education, language, and arrival year. This comprehensive view helps guide targeted health initiatives to better support newcomers’ healthcare needs