3B2 Online Interventions for Family Caregivers: Employing Patient Engagement Principles & Practice

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  • Introduction: Health care professionals frequently partner with librarians when developing online tools for patients and their families. However, even with input from the most qualified of information professionals, these websites are often difficult to identify and can remain largely unused by those populations for which they were designed. The Online Interventions for Family Caregivers Study addresses this very issue. Description: Patient engagement (PE) principles and practice were utilized by inviting caregivers to participate as equal partners in all stages of the project. Their participation involved designing the internet search strategy and website review template, conducting searches for caregiver resources available on the internet, contributing to the analysis of findings, authoring the final report, and presenting results to the funding agency. Outcomes: The Canadian Strategy of Patient-Oriented Research (SPOR) promotes active collaboration with individuals using the health care system to bring about positive change. By including caregivers in all aspects of our study, we have strengthened both the quality of our final report and our skills as health professionals and librarians. Our caregiver partners taught us how personal hardships and successes influence information seeking behaviours and in turn, impact how we should consider presenting and organizing information to maximize relevance and ease of use. Discussion: The purpose of this presentation is to share the values underpinning PE and to provide an overview of how PE principles can be operationalised in both information seeking research and patient focused information service design.

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    Conference/Workshop Presentation
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    Attribution-NonCommercial-NoDerivatives 4.0 International