Patients & Public

Introduction

The Maritime SPOR SUPPORT Unit (MSSU) actively engages patients and the public in all aspects of governance and research. This engagement means meaningful and active collaboration  over the course of a research project. Engagement can include activities where researchers and patients discuss issues, learn together, and (possibly) develop ongoing partnerships. It can also include researchers and patients working together on committees and research teams. Patient Engagement is a key part of patient-oriented research. When researchers and patients work together, they can improve research by developing better 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.

Sign up for our patient register if you would like regular updates on ways you can get involved in health research. You can sign up by clicking on this link.

Partner Organizations

Building Research for Integrated Primary Healthcare (BRIC NS)

BRIC NS—an acronym for Building Research for Integrated Primary Healthcare in Nova Scotia—is a research network that seeks to improve primary health care and integrated services for people with—or at risk of developing—complex health care needs. It is part of a Canada-wide “network of networks” that shares the same overarching goal.

You can learn more about BRIC NS at their website: https://bricns.com/

Getting Involved

There are many different ways patients can get involved in research and other projects with MSSU and BRIC NS:

  1. Governance on Committees – Patient Advisors Positions
    Organizations like the MSSU and BRIC NS include patient advisors on governance committees. Patients are involved as patient advisors on all MSSU committees, including Provincial Advisory Committees, Data Access Committees and Research Advisory Committees and more. BRIC NS includes patients on its Advisory Council and consults with Patient Advisors regularly for operational decisions. Patient Advisors have an equal voice in their committee work and are essential members of the team.

 

  1. Joining a 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. You can use the link above to join our patient register. This register helps us match patients and research teams based on research topic, your interest, and expectations.

If you are interested in joining a team or research opportunity, please fill out this online form and you will be contacted shortly.

 

  1. Patient Research Preferences
    A key component of Patient Engagement in the MSSU and BRIC NS is ensuring that the research priorities of Maritime patients and communities are reflected in priority setting processes. These priorities help shape the strategic direction of the MSSU and BRIC NS 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

Brian.condran@nshealth.ca 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. To learn more about this project contact brian.condran@nshealth.ca 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.condran@nshealth.ca or (902) 473-4546. You can also find more information on the MSSU training and events calendar.