People with Lived Experience (PWLE) Engagement
The voices and perspectives of patients, caregivers, and family members are essential to the work of the Ted Rogers Centre for Heart Research. This commitment is shared by the Peter Munk Cardiac Centre and by UHN as a whole.
What is PWLE engagement?
Engagement means putting people with lived experience first in a meaningful and proactive way. For us, the term “PWLE” refers patients, caregivers or family members.
Engagement means working together – not only on building the relationship between health care providers and PWLE, but also on guiding the research we do, the way we design our programs and services, and how we create equitable access to care.
Engagement can be both formal and informal. It may be very structured, like participating in UHN’s Patient Partners Program or sitting on the PWLE Advisory Committee that lead the development of this website. Or it may be more unstructured, such as speaking at an event, writing a piece for this website, or serving as a peer reviewer for a research competition.
How can you get involved?
We routinely post opportunities to get involved and highlight studies currently recruiting patients, caregivers, and family members on this website and in our newsletter.
You can also ask your health care provider about ways to get involved.
You can also contact us at thehearthub@uhn.ca to chat about your interests.
What should you expect?
Depending on your interests and experience, different options for participation are available. We always provide background on the opportunities we share so you can decide if you are interested.
If you are joining a research team to collaborate on proposal development, you’ll be introduced to the project, and everyone involved. You’ll be a part of meetings to explore the research topic and you’ll be asked to provide your perspective on what’s important and how to approach the question. You may be asked to review the proposal.
If you are participating in a study, the project will be explained to you along with its benefits and risks. You’ll have the chance to ask questions, so you understand exactly what’s asked of you. You must consent to participating.
If you are asked to sit on a funding review panel, the funding competition will be explained to you along with the process for evaluating the proposals. You will evaluate the applications and then join discussions with other reviewers representing different types of expertise relevant to the research. As a group, you will provide your perspectives on which proposals should be selected for funding.
How are PWLE recognized for their contributions?
We want to remove barriers to your involvement and show our appreciation of your time and knowledge. That means covering your expenses, such as parking, and offering small honorariums to compensate you for your time.
Our PWLE Appreciation Policy describes our approach. We recognize that not everyone wants financial compensation, but we strive to recognize your contributions and welcome the chance to discuss your expectations.
To learn about engagement opportunities, subscribe to our newsletter or email us at thehearthub@uhn.ca.