VAST has been fortunate enough to work with and learn from the EPLED team and members of the EPLED Advisory Group. Information on the session is below and you can register to attend here.

A co-developed evaluation framework for a patient engagement program within a national research network

Speakers: Mastoora Rizai (EPLED practicum student), Karen Myers Barnett (EPLED Advisory Group member), Linda Grossman (EPLED Advisory Group alumna), and Ellen Snowball (EPLED program manager)

While there is growing consensus on the importance of engaging people with lived experience in research (i.e., patient engagement or patient involvement), less is known of the best approaches to evaluating these initiatives. Without evaluation, efforts to assess the impact or improve practice are limited, risking not only failing to achieve intended benefits but potentially having negative effects (e.g., research waste, experiences of tokenism). In this webinar, presenters will describe the co-development of a tailored evaluation framework for Engagement of People with Lived Experience of Dementia (EPLED), a CCNA program and Advisory Group composed of people with lived experience (i.e., people living with dementia, family and current or former caregivers/care partners), recruited from across Canada, to be engaged in research. This webinar will provide participants with an understanding of participatory evaluation and an example of applying a flexible process for co-developing an evaluation framework in the context of the CCNA’s EPLED program.