Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.

Frontiers in dementia Pub Date : 2024-09-16 eCollection Date: 2024-01-01 DOI:10.3389/frdem.2024.1426019
Susanne de Wolf-Linder, Iris Kramer, Martina Hersperger, Maria Schubert, Sonja Bächi, Monika Stolz, Emma Wolverson, Christina Ramsenthaler
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Abstract

Background: Patient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities.

Aim: To describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers.

Materials and methods: A participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis.

Results: 22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle.

Discussion: Informing and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.

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患者和公众有意义地参与传播--在痴呆症研究中纳入共同生产。
背景:目的:描述为一个研究项目共同创建和共同制定传播策略的方法、形式和经验教训,该项目侧重于为痴呆症患者及其非正式护理者在常规社区姑息治疗中建立以患者为中心的结果测量:举办了一次参与式混合形式研讨会,与一个PPIE小组共同制定传播策略。在研讨会之前,通过视频介绍研究结果并分享一份提示清单,以征求对传播策略和知识转化的意见。研讨会后进行了一次调查,以巩固传播战略。我们采用定性专题分析法对研讨会会议记录和调查答复进行了分析。出现了两大主题:(a) 知识转化:在研究与实践之间架起桥梁,(b) 合作与传播:需要每个人的声音。与会者建议对传播方法和材料进行重大改革。成功的知识转化取决于强大的证据基础。为此,需要为特定受众量身定制材料。需要通过 PPIE 成员在传播活动中的共同制作,整合每个人的声音,以影响社会变革。在传播战略的框架内,共同开展有针对性的传播活动,跨越研究周期的各个阶段:讨论:向公众和政策制定者宣传和教育残疾人的需求,有赖于在研究周期的各个阶段传播和促进知识转化。
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