Authors
Mastoora Rizai, Linda Grossman, Inbal Itzhak, Rosette Loughlin, Karen Myers Barnett, Ellen Snowball, Juanita-Dawne Bacsu, Kelly Beaton, Emma Lanza, Jennifer Bethell
Published in
Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 5. Pages e70899.
Abstract
While there is growing consensus on the importance of engaging people with lived experience in research, there is little agreement on how best to evaluate these initiatives. Co-designed frameworks tailored to specific contexts have been recommended. Our objective was to co-develop an evaluation framework to assess the implementation and impact of the Canadian Consortium on Neurodegeneration in Aging (CCNA)'s Engagement of People with Lived Experience of Dementia (EPLED) programme.
We followed a four-step process: (1) determine objectives for engagement; (2) co-develop a theory of change; (3) identify quantitative and qualitative methods to collect information and develop an evaluation plan; and (4) establish a feedback loop. The framework was co-produced with four members of the EPLED Advisory Group: a person living with dementia and three caregivers/care partners.
The programme logic model, a visual roadmap, was a foundational step, articulating programme activities and their linkages to intended outcomes. The framework was guided by four evaluation questions, each aligned with indicators, methods and information sources. Our data collection approach includes data collection from Advisory Group members and researchers, using questionnaires and an arts-based evaluation design tailored to promote inclusivity and engagement. Data will be collated and disseminated through various mediums and responses from the arts-based activity will be compiled into a collective digital mural.
Our report contributes to the existing literature by providing an innovative example of a co-developed evaluation framework in the context of a national research network. The insights could inform future efforts in evaluating initiatives intended to meaningfully engage patient partners in research, particularly people with lived experience of dementia.
People with lived experience took part in all aspects of this work. They contributed to the development of the funding proposal and were listed as co-investigators on the grant. They were involved in the development of the evaluation framework described herein and have co-authored the current manuscript.
PMID:
42878207
Bibliographic data and abstract were imported from PubMed on 16 Oct 2026.
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