At Women’s College Hospital, we are committed to engaging patients, caregivers, families and community members in every aspect of our work, including research.
We strive to continually improve how we engage with people with lived experience (PWLE) in our research to ensure that our work centres and benefits the people and communities we serve. We believe that the inclusion of people with lived experience at every stage of the research process leads to greater innovation, impact and patient and community benefit.
Our Patient and Community Engagement lead, Victoria Forster, leads our efforts in this space, working collaboratively with researchers and teams from across the hospital.
Our approach to engaging people with lived experience in research:
- Create welcoming and respectful spaces where patients and community members are actively involved in all stages of the research process, from idea generation through to knowledge transfer and implementation.
- Ensure that people with lived experience who contribute to our research are appropriately valued and empowered when they engage with our research projects.
- Provide education to our researchers, patients and community members on how to develop and maintain productive and mutually beneficial working relationships.
- Support for people with lived experience who engage with us on our research projects.
- Embed equity, diversity and inclusion principles in all aspects of patient engagement at Women’s College Hospital.
- Celebrate the successes of our researchers and people with lived experience that contribute to research.
Patient Engagement in Research
People with lived experience are typically involved in research in one of two main ways at WCH:
- As a Study Participant
This may involve taking part in surveys or interviews, donating a biological sample, allowing researchers to track the progress of your care or treatment, or taking part in a study evaluating a new drug, medical device or treatment.
You can find out more about studies that you may be able to participate in on the Active Studies page of our site.
- Contributing Directly to the Research Process
This may involve working with researchers to identify research questions and priorities, preparing grant applications for funders, developing a plan for conducting the research, collecting data, analyzing research results and their impact, and disseminating the new knowledge to communities and the wider world.
Involving people with lived experience as a part of the research team is an important part of conducting innovative and equitable research.
WCH Experience Advisor Program
Experience Advisors are Women’s College Hospital patients, care partners, family, and community members who volunteer their time to work with WCH leaders, healthcare providers and staff to help shape care, programs, and services. The Community Liaison Advisory Committee (CLAC) is chaired by Experience Advisors who serve as an advisory body to the hospital and its Board of Directors on community-identified needs and gaps.
EMPaCT
Equity Mobilizing Partnerships in Community (EMPaCT) is a novel and scalable patient partnership model co-designed to centre the voices of diverse community members and build capacity for equity-promoting patient-oriented decision-making in healthcare.
First Hand: Insights from PWLE and Health Care Professionals Involved in Patient Engagement in Research
PWLE at the Heart of WCH’s Learning Health System Transformation
Women’s College Hospital (WCH) is embarking on an exciting journey to become a Learning Health System (LHS). Read on to learn more about the ongoing transition and how PWLE are vital in informing what an LHS will look like at WCH.
Living and Telling: A PWLE’s Road to Advocacy and Patient Engagement
Dawn Barker shares how her journey with breast cancer and caregiving for her parents shaped her advocacy, emphasizing that PWLE engagement can bridge the gap between clinical research and the human realities of disease, ensuring medical advancements are more empathetic, inclusive, and effective in addressing real-world needs. Read More.
From Focus Groups to Funding: How PWLE Shaped My Research Approach
WCH researcher Rachel Savage explores the importance of patient engagement in research development, showcasing how integrating input from PWLE can enhance the quality and relevance of research proposals. Read More.