What is the MSSU?
The Maritime SPOR SUPPORT Unit (MSSU) is one of several Support for People and Patient-Oriented Research and Trials (SUPPORT) Units across Canada, bringing health research findings to life by helping to integrate them into patient care. We engage with patients from across New Brunswick (NB), Nova Scotia (NS), and Prince Edward Island (PEI), and collaborate with the research community on governance, priority setting, and the planning and conducting of research. We contribute to an enhanced health system, engaged health research, and improved health outcomes.
The MSSU and other SUPPORT Units across Canada are administered by the Strategy for Patient-Oriented Research (SPOR).
What is SPOR?
Canada's Strategy for Patient-Oriented Research (SPOR) is about ensuring that the right patient receives the right intervention at the right time. An initiative of CIHR, SPOR is focused on integrating health research more effectively into care. The objective of SPOR is to foster evidence-informed health care by bringing innovative diagnostic and therapeutic approaches to the point of care, so as to ensure greater quality, accountability, and accessibility of care.
SPOR is a coalition of federal, provincial and territorial partners – all dedicated to the integration of research into care:
- patients and caregivers
- health practitioners
- policy makers
- provincial/territorial health authorities
- academic institutions
- private sector
SPOR adheres to the following principles:
- Patients need to be involved in all aspects of the research to ensure questions and results are relevant;
- Decision-makers and clinicians need to be involved throughout the entire research process to ensure integration into policy and practice;
- Funding under SPOR is based on a 1:1 matching formula with non-federal government partners to ensure relevance and applicability;
- Effective patient-oriented research requires a multi-disciplinary approach; and
- SPOR is outcome driven and incorporates performance measurement and evaluation as integral components of the initiative.
What is patient-oriented research (POR)?
Patient-oriented research (POR) refers to a continuum of research that engages patients as partners and focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
What is the primary role of the MSSU?
The MSSU is dedicated to supporting patient-oriented research and health services decision-making in the Maritime provinces of New Brunswick (NB), Nova Scotia (NS) and Prince Edward Island (PEI). The MSSU offers support for patient-oriented health research teams as well as special events and training opportunities. The MSSU also conducts several research projects per year based on priorities set by the Provincial Advisory Committee (PAC).
What kind of research does the MSSU conduct and how are research priorities decided?
The MSSU’s research priorities are determined by the Provincial Advisory Committees (PAC) in consultation with stakeholders (governments, universities, SPOR Networks, health organizations, researchers, and patients and their families). The MSSU conducts several research projects per year based on these priorities, and supports others that fall within the themes identified by our stakeholders. SPOR Network and independent researchers’ (from regional health authorities, universities, and government) projects are submitted through the MSSU intake form. If the project requires access to data, MSSU will guide the researcher through the process with New Brunswick Institute for Research, Data and Training (NB-IRDT), Health Data Nova Scotia (HDNS), or PEI’s Secure Island Data Repository (SIDR).
How can the MSSU help with your research project?
Dedicated to supporting patient-oriented research and health services decision making in the Maritimes, we offer support for health research teams for the planning and implementation of: patient engagement; knowledge translation; evidence synthesis; data access and navigation; and privacy and ethics. We also provide training opportunities in these fields to the health research community.
What are some examples of the benefits a researcher can expect through MSSU support?
- Begin your research program with expert help devising and executing evidence synthesis research. Our Evidence Synthesis Coordinator can help define your research question and inclusion/exclusion criteria, develop search terms and synonyms, and execute a search strategy;
- Enhance your grant proposal by incorporating a patient engagement strategy;
- Disseminate your results with expert help creating a detailed, start to finish, knowledge translation strategy;
- Consult with our Data Coordination Specialist or Database Analyst to discuss the available data holdings and how to access them;
- Meet with our privacy expert to discuss ethical principles and legal requirements related to your research.
Are independent researchers charged for services provided by the MSSU?
The MSSU provides up to 15 hours of consultation services in-kind for each type of support that is offered. If more extensive services are required, the MSSU can work with the researcher to develop a quote for the work. Access to administrative health data is subject to fees. All prospective users of administrative data are required to complete a data access feasibility and cost estimate request form specific to the data repository in the researcher’s jurisdiction (NB-IRDT, HDNS, SIDR). The MSSU Data Coordination Specialist or Database Analyst can provide support to the researcher during this process.
How can the MSSU support researchers accessing administrative health data?
Research teams can consult with the MSSU Data Coordination Specialist or Database Analyst in their area to discuss the available data holdings and how to access them. The MSSU can guide the research team through the data access and research ethics processes by providing support and advice beginning at the early stages of project planning. Consultation with the MSSU allows researchers to quickly determine the feasibility and potential cost of their project. The MSSU can also support the linkage of researcher-collected data with our extensive administrative databases.
A number of workshops about accessing health administrative data have been held and are planned. Please check our Training and Events Calendar for more details on upcoming sessions and the MSSU Training Events Archive for recordings of past sessions.
What administrative health data holdings are available in the Maritimes?
NB Health Administrative Data is available through NB-IRDT at the University of New Brunswick.
Data holdings include:
- Physician Billing
- CIHI Hospital Discharge Abstract Data
- Citizen Database
- Provider Registry
- Death Certificate Data from Vital Statistics
- New Brunswick Cancer Registry
- Healthy Toddler Assessment
- NB Trauma Data
- Amyotrophic Lateral Sclerosis (ALS) Data
- Canadian MIS Database (CMDB)
- NB Facility Acute Care Profiles
- Hemoglobin A1C Data
- BizNet Immigrant Landing Records
- Long Term Care
- Canadian Chronic Disease Surveillance System (CCDSS)
- New Brunswick Breast Cancer Screening
NS Health Administrative Data is available through Dalhousie University’s HDNS.
Data holdings include:
- Insured Patient Registry (MSI Data)
- Patient Geography
- Licensed Provider Registry (MSI Data)
- Provider Billings for physicians, optometrists, nurse practitioners, and prosthetics
- CIHI Discharge Abstract Database (DAD)
- Vital Statistics (Death)
- Seniors’/Family PharmaCare
- Community Services PharmaCare
- CIHI National Ambulatory Care Reporting System (NACRS)
- Long-term Care Eligibility Data
PEI Health Administrative Data is available through SIDR at the University of Prince Edward Island.
Data holdings include:
- Discharge Abstract Data
- Physician Billing
- Patient Registry
How can patients be engaged in research?
The SPOR Patient Engagement Framework says that ‘Patients bring their perspective as experts from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the health care system.’ Patients can be engaged in research in many different ways. Sometimes this can mean meeting with researchers once or twice during a specific activity, while other times it can mean working as a research team member for one study, or through a long-term program of research.
Some examples of how patients can be engaged in research include:
- As research committee members who sit on an advisory committee and guide a research team on deciding how a research project unfolds.
- As patient engagement researchers who work as research team members to recruit participants, collect data and interpret findings.
- As contributors to identifying the right research question or study design through actives such as team meetings, workshops, discussion groups and other planning activities.
- As supporters of participant-friendly research studies, by acting as a connection between their communities and peers, and other research team members.
These are often volunteer roles for patients. Research teams will often cover certain expenses such as parking and travel costs, as this makes it easier for patients to participate. Some teams offer honoraria for patients who engage in research. Patients involved with a research team may also be included on conference publications, and participate in conferences.
How can the MSSU support researchers with patient engagement?
The MSSU Patient Engagement Coordinator can help research teams integrate patient engagement into their patient-oriented research. The following services are available to support researchers with patient engagement:
- Support for research teams through the planning and implementation of patient engagement strategies, including setting a plan for how to engage patients in the project;
- Provide practical or methodological guidance on best practices in patient engagement;
- Provide resources and tools for patient engagement;
- Provide training in patient engagement.
We advise researchers that the best time to get in touch is before a research question is even set, but we can help at all stages of the research.