The Engagement of People with Lived Experience of Dementia, or EPLED, is an Advisory Group and program introduced during Phase II of CCNA. EPLED works to actively involve individuals with lived experience of dementia (i.e., people living with dementia and their care partners) in the research process. Our objectives include supporting engagement, collaborating with researchers and partners, and advancing patient engagement methods.
When considering engagement of people with lived experience of dementia in your grant application, please consider the following strategies:
Do your research: Use recommendations as your guide to collaborating with people with lived experience of dementia on your research project. Be informed about best practices for engagement.
- Pride in Patient Engagement in Research (PiPER) Toolkit
- Strategy for Patient-Oriented Research (SPOR) – Patient Engagement Framework
- Healthcare Excellence Canada – Valuing All Voices Framework
- EPLED – Materials for Researchers
Recognize expertise: Include compensation and reimbursement in your plan’s budget for lived experience engagement.
- Canadian Institutes of Health Research (CIHR) Institutes of Genetics – Patient Partner Compensation Guidelines
- SPOR – Considerations when paying patient partners in research
Know your audience: Use person-centered, plain language guidelines (e.g., accessible, inclusive, and non-stigmatizing language). Review the Knowledge Mobilization recommendations.
- Government of Canada – Plain language, accessibility, and inclusive communications
- Web Content Accessibility Guidelines
Plan your time wisely: We recommend getting in touch as soon as possible upon receiving successful notification of your funding.
EPLED has a step-by-step process for initiating engagement, including filling out an application form and presenting to lived experience members.
Contact
Once you have received successful notification for your funding, please contact program managers Ellen Snowball at ellen.snowball@uhn.ca and Emma Lanza at emma.lanza@ladydavis.ca.