Evaluating a patient engagement program within a national research network

Abstract

AbstractBackgroundThe Engagement of People with Lived Experience of Dementia (EPLED) is a program within the Canadian Consortium on Neurodegeneration in Aging (CCNA). The role of EPLED is to enable those with lived experience of dementia – persons with dementia and their care partners (i.e., friends, family and caregivers) – to be meaningfully and actively involved in the CCNA research process. The EPLED Advisory Group is composed of people with lived experience of dementia.MethodThe EPLED researchers, Advisory Group and program staff worked to develop an approach to evaluate EPLED activities. Evaluation will include capturing quantitative data on Advisory Group activities (e.g., number and nature of projects) as well as Advisory Group and CCNA perspectives on the engagement activity. Existing resources were used to identify key domains and Advisory Group members were invited to share their perspectives on the most relevant questions, including by voting on existing questions or suggesting their own. Ultimately, the Patient Engagement in Research Scale (PEIRS‐22) was selected to capture Advisory Group perspectives, but with two additional questions, from the full (37‐item) PEIRS and free‐text questions. EPLED also developed a short questionnaire for CCNA researchers to evaluate their experience working with Advisory Group members, including questions related to timing, objectives, engagement, collaboration and impact. Both questionnaires were transferred to Google Forms for online data collection.ResultWe will present the EPLED program evaluation plan and data from the first year of activities. We will describe the nature of the Advisory Group’s work as well as the perceptions from members and researchers.ConclusionPatient engagement in research is becoming more widespread and, for some research funding, an expectation. Our evaluation plan will be used to improve the EPLED program and plan future activities. Our results may also help other patient partners, researchers and research organisations to develop and implement their own activities.