The Maritime SPOR SUPPORT Unit (MSSU) seeks to include patients and the public in all aspects of MSSU governance and research. Patient Engagement is a fundamental component of the patient-oriented research process. Early engagement with the patients leads to formulating research topics, questions, and methodology.
Why Patient Input Matters
The MSSU believes having patients as active partners in health research will lead to improved health outcomes and an enhanced health care system for the Maritimes. Patients bring the perspective of “experts” as users of the health system, from their unique experiences and knowledge of their own health. By encouraging patient engagement and public participation in the research process, patients may gain many benefits through their involvement including increased confidence, skill development, access to information they can understand and use, and a feeling of shared accomplishment from contributing to research that is relevant to their needs and experiences.
The MSSU and the Maritime patients and public community have the opportunity to engage in three distinctive streams:
Governance on the MSSU Committees – Patient Advisors Positions
Patients are involved as patient advisors on all MSSU committees, including Provincial Advisory Committees, Data Access Committees and Research Advisory Committees and more. Patient Advisorshave an equal voice in their committee work and are essential members of the team.
Joining an MSSU Research Team
The valuable experiential knowledge that patients bring to a research team can contribute and influence the areas of research, the research question, methodologies, analysis, knowledge translation, implementation, and evaluation of research.Research teams seek patient participation on a number of different levels and at different stages of the research process. MSSU matches interested patients and groups with research teams in order to ensure an appropriate level of engagement based on expectations, experience, interests, and rationale.
If you are interested in joining a team or research opportunity, please fill out this online form (Joining an MSSU Research Team) and you will be contacted shortly.
Patient Research Preferences
A key component of the Patient Engagement in the MSSU is ensuring that the research preferences of Maritime patients and communities are reflected in the priorities setting process of the MSSU. These priorities help shape the strategic direction of the MSSU and the areas of research that are supported and encouraged.
Opportunities to Engage on MSSU Research
Alternate Levels of Care: The MSSU is developing a program of research on alternate levels of care (ALC) in the Maritimes. Many Maritime patients stay in the hospital longer than they need to because they cannot be safely discharged home. This is called alternative levels of care because a patient is still in the hospital but doesn’t actually need hospital services or treatments anymore. We know that reducing ALC can free up hospital beds for those who need them, which in turn reduces wait times and the burden on emergency services. But it also benefits the patients. It reduces their risk of deteriorating health that can result from long waits in a hospital bed and ensures that they are getting the type of care they need, where they need it.
If you are a patient or caregiver with personal experience of this issue, and interest in engagement opportunities, please contact the MSSU Patient Engagement Coordinator at firstname.lastname@example.org for more information.
Unattached Patients: The number of Nova Scotians looking for a family doctor grew suddenly during 2016. The MSSU is doing research to find out why. We want to work with people trying to find a family doctor to study this issue. Your experience and expertise could help us do better research. We have two discussion groups planned for June 2017; to learn more or register, contact: email@example.com
To learn about other ways to get involved in this research contact firstname.lastname@example.org or 902-473-4546.
Learning Opportunities and Other Activities
Strategy for Patient-Oriented Research (SPOR) Foundations in Patient Oriented Research curriculum: This program provides background information for people who are interested in joining a research team as a Patient Advisor. If you are interested in this opportunity, please contact Brian Condran, the MSSU Patient Engagement Coordinator, at Brian.email@example.com or (902) 473-4546. You can also find more information on the MSSU training and events calendar.