ArticleInternational journal of population data science2020
Developing and evaluating a model of public involvement and engagement embedded in a national longitudinal study: HealthWise Wales.
Article in International journal of population data science, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.International journal of population data science · 2023Article
- Parent-Reported Relations Between Vocabulary and Motor Development in Infancy: Differences Between Verbs and Nouns.Infancy : the official journal of the International Society on Infant StudiesArticle
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Authors and funding
5 authors.
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Abstract
introductionWorldwide large cohort studies have invested in community engagement to promote studies and aid recruitment. HealthWise Wales, a national population study, aims to create a register of 'research ready' participants and provide long-term follow up data on health behaviours, outcomes and wider social and environmental determinants. Public involvement and engagement was key to the development of HealthWise Wales. We describe how a model for promoting HealthWise Wales was co-produced with members of the public.
methodsMembers of the public were invited to take part in a workshop, either in North or South Wales, to discuss public involvement in long-term cohort studies. Information on community engagement, projects that had used the concept of "citizen scientists" to promote involvement, and other large longitudinal studies was provided to 15 members of the public prior to the meeting. Eight of these attended the workshops, to explore the concept of citizen scientist and how it may relate to HealthWise Wales.
resultsData from two workshops was used to draft a protocol for involvement that was reviewed and refined by members of the public. The protocol describes two levels of public involvement, HealthWise Wales Champion or Supporter. The Champion is a more formal role that requires promoting the project at public events, whereas Supporters pledge to promote the study to friends and family. Training was provided to 17 of the 26 members of the public who had expressed interest in becoming HWW Champions. Twelve trained Champions attended 41 events to promote the study and collect 'consent to contact' forms from members of the public.
conclusionsIt is possible to develop a model of community engagement with members of the public to promote and raise awareness of a national population study in Wales. It is essential that adequate resource is provided to support the concept.
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