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.
Highlights
Worldwide large cohort studies have invested in community engagement to promote studies and aid recruitment
This paper describes how the HealthWise Wales (HWW) research team initiated a model of public involvement and engagement
The objective was to establish a model of co-production with Patient and Public Involvement (PPI) members in Wales, to create and implement a protocol of community public engagement, to raise awareness of HWW, research in general, and promote the study with other members of the public, with the ultimate aim of increasing recruitment
Summary
‘about’ or ‘for’ them [13]. The term co-production as used in this paper, is based on the key principles described in the guidance published by INVOLVE. [14]. Citizen science ( known as crowd science, crowd-sourced science, civic science, volunteer monitoring or networked science) was defined as scientific research conducted, in whole or in part, by amateur or nonprofessional scientists This concept was used as a starting point to explain how members of the public had been involved in research, with particular regard to studies that could not otherwise have been conducted. The definition of public involvement in this paper reflects the INVOLVE definition of research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, Developing a community public engagement protocol Data collected from both groups were combined and key points used to draft a protocol. The protocol was approved by Wales REC 3 ethical committee, May 2016
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