Patient Partner Opportunities | ME|FM Society of BC

Research and other patient partner opportunities

Introduction

Patient partners are those with lived experience, caregivers and/or family who collaborate with researchers to provide their unique perspectives through the research process.

The inclusion of patient partners in research results in the following (see here):

Improved patient safety
Better health outcomes
Reduced health care costs
Better decision-making.

If you want to share your patient experience, below is a list of projects currently seeking patient partners. When choosing a project, consider the following:

Do you fit the listed criteria?
Do you have the requisite time and energy to commit fully to the project?
Can you participate from home or will the project require your attendance elsewhere?

Opportunities

Research Opportunity: Canadian Youth & Young Adults with ME/CFS

Researchers from Trent University are conducting an important study on how ME/CFS symptoms influence health-related quality of life and school participation among adolescents and young adults (ages 14-29) living with ME/CFS in Canada.

This year-long study is seeking participants who:

Self-report an ME/CFS diagnosis
Experience unexplained fatigue
Have had to withdraw from school due to ME/CFS or fatigue
Are without health conditions (control group)

All participants must live and attend school in Canada (or have recently withdrawn from school).

Why This Matters: Research specific to youth and young adults with ME/CFS is critically needed. Your participation helps build the evidence base that can improve educational accommodations, healthcare approaches, and quality of life for younger people living with these conditions.

Learn more and participate: [LINK TO STUDY]

Questions? Contact Brian Abernethy at brianabernethy@trentu.ca or Dr. Sarah West at sarahwest@trentu.ca

This study has been reviewed by the Trent University Research Ethics Board (Study #29131).

Patient and Family Advisors, Access to Service Project – Victoria Hospice Society

Victoria Hospice Society is seeking to engage people with lived experience with a life-limiting condition – either personally or through supporting a loved one. The purpose of this engagement is to gather meaningful patient, family and caregiver insights.

Open to: Participants across the province (participants ARE NOT required to be PVN members)
Deadline: December 31

Appropriate Use of Opioids for Pain Management in BC

Managing pain is a daily challenge for many people in British Columbia. We want to hear about your experiences taking opioids for pain management. Our Advisory Group will identify what’s working well, where there may be gaps, and what concerns exist. These insights will help guide evidence-based improvements in how opioids are prescribed for pain management.

Open to: Participants across the province (participants ARE NOT required to be PVN members)
Deadline: December 16

Physician Quality Improvement (PQI) Projects at The Providence Health Care (PHC) and Vancouver Coastal Health (VCH)

PHC/ VCH PQI Program aims to enhance Quality Improvement (QI) capacity, build connections, and create a continuous improvement culture to transform our local health system. Patient partners will share their lived or living experience as a patient or family member by partnering with physicians who have their own unique quality improvement projects.

Open to: Participants from Fraser Valley and Lower Mainland region (participants ARE NOT required to be PVN members)
Deadline: January 10